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What is TSC?
Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs. Despite its complexity,
TSC Alert
2024 TSC Biosample Seed Grants Available
The TSC Alliance announces a funding opportunity for 2024 Biosample Seed Grants to support research using blood, tissue, and/or cells, DNA, or RNA isolated from samples in the TSC Biosample
TSC Matters Post
TSC Alliance support resources when going back to school
As we enter back-to-school season, we want to remind you about the support and resources the TSC Alliance provides. Navigating the educational journey with TSC can be overwhelming, but the
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Celebrate 50 years of the TSC Alliance and share your story!
Thank you for sharing your story with us for the TSC Alliance’s 50th Anniversary Gala! The submission window is now closed.
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Hold for 2025 International TSC Research Conference
Mark your calendars now for the 2025 International TSC Research Conference, hosted by the TSC Alliance, scheduled for June 26-28, 2025, at the Bethesda North Marriott in Bethesda, MD. The
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2010 TSC Alliance Constituent Survey: Key Findings
The results from the 2010 Constituency Survey will be used to help the TSC Alliance define priorities going forward and guide us as we develop goals and objectives to reach
TSC Matters Post
Host Step Forward to Cure TSC in your city in 2025!
Are you interested in hosting Step Forward to Cure TSC in your city in 2025? Please complete the 2025 Step Forward to Cure TSC interest form and a member of our Community
TSC Matters Post
Meet the 2024 Team TSC NYC Marathon runners!
The TSC Alliance is thrilled to have six Team TSC athletes participating in the TCS NYC Marathon on Sunday, November 3, 2024. This year’s team consists of TSC individuals, parents, relatives, specialists and researchers who
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Contact the TSC Alliance
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2024 Regional TSC Conference Series – Palo Alto, CA
One-day Regional Conferences feature leading local researchers and clinicians specializing in TSC. Topics will include sessions across the lifespan of TSC, including: Research updates, including upcoming clinical studies and trials
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TSC Canada ST Educational Series for Caregivers/Families and Persons living with TSC – Second Session
Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) is hosting an educational series to empower patients and their families with knowledge and resources related to tuberous sclerosis complex (TSC). Register
TSC Matters Post
Sleep Study in TSC
Aims of the study The main aim of this study is to document current sleep management strategies employed by families and or paid care staff caring for children or
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New TSC Academy course available!
A new TSC Academy course, “TSC Clinical Consensus Guidelines,” provides an overview of the importance of the International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations , how they
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TSC Alliance 50th Anniversary Gala: An Evening of Progress and Promise
Join us for an evening of progress and promise as we celebrate the 50th Anniversary of the TSC Alliance at Cipriani 42nd Street in New York City! Learn more and
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Announcing the 2024 Regional TSC Conference and Transition Workshop Series
The TSC Alliance will be hosting two Regional TSC Conferences and two Transition Workshops in 2024 aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers. Attendees will also
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Register today for the 2024 Step Forward to Cure TSC!
Register today for the 2024 Step Forward to Cure TSC® at www.stepforwardtocuretsc.org. Join thousands of tuberous sclerosis complex (TSC) community members, corporate partners, and other advocates for a month-long series of events
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2024 Regional TSC Conference Series – Chapel Hill, NC
One-day Regional Conferences feature leading local researchers and clinicians specializing in TSC. Topics will include sessions across the lifespan of TSC, including: Research updates, including upcoming clinical studies and trials
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Step Forward to Cure TSC Walk in Irwindale, California
Join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 18 at Irwindale Speedway in Irwindale, CA. Register today
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Step Forward to Cure TSC Walk in Carrollton, Texas
Join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Sunday, May 19 at Mary Heads Carter Park in Carrollton, TX.
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Step Forward to Cure TSC Walk in Rockville, MD
Join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Sunday, May 19 at Charles E. Smith Jewish Day School in
TSC Alert
TSC research opportunity
TSC clinician and researcher Dr. Mark Keezer and Dr. Catherine Larochelle have an opening in their lab for a PhD student or postdoctoral fellow at the CHUM Research Center (CRCHUM) in Montreal,
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Step Forward to Cure TSC in Tulsa, Oklahoma
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 18 at LaFortune Park in Tulsa, OK. Register
TSC Matters Post
Rainbow Study (Remote Assessment an Intervention for Behavior Problems in Kids with TSC)
The Remote Assessment and Intervention for Behavior Problems in Kids With TSC (RAINBOW) study is seeking to learn more about behavior problems in young children with tuberous sclerosis complex. The
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Step Forward to Cure TSC Walk in Chicago, Illinois
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 18 at Lake Shore Park in Chicago, IL.
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Step Forward to Cure TSC Walk in Northglenn, Colorado
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 11 at E.B. Rains Jr. Memorial Park in
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Step Forward to Cure TSC Walk in Shepherdstown, West Virginia
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 11 at Shepherd University in Shepherdstown, WV. Register
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Step Forward to Cure TSC Walk in Pleasant View, UT
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, April 27 at Orchard Springs Elementary School in Pleasant
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Step Forward to Cure TSC Walk in Rock Hill, South Carolina
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, May 4 at Cherry Park in Rock Hill, SC.
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TSC Diagnostic Criteria, Surveillance and Management Guidelines
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Navigating the early years of TSC (in utero to 5 years of age)
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Navigating the school age years of TSC (6 to 13 years of age)
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Navigating the transition years of TSC (14 to 26 years of age)
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Navigating the adult years of TSC
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2024 TSC Alliance Summit
2024 marks the TSC Alliance’s 50th Anniversary Year. To kick off this momentous year, we are hosting the 2024 TSC Alliance Summit, which includes the Board of Directors Meeting, Endowment
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TSC clinical trials
A clinical trial is a type of research study using human volunteers designed to determine the safety and effectiveness of a drug, biologic (such as a vaccine), device (such as
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Reproductive decision making and TSC
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TSC-Associated Neuropsychatric Disorders (TAND) and Education
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TSC Bcureful Research Study Participation Travel Assistance Program
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Tuberous Sclerosis Complex Bcureful TSC Clinic Travel Assistance Program
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TSC Canada Volunteer Application
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Marinus, Ganaxolone and the TSC CALM study (2021 E-Webinar Series)
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What is facial angiofibroma associated with TSC and how can it be managed? (2022 Research Education Webinar Series)
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Basimglurant: potential new mode of action for seizures in TSC (2022 Research Education Webinar Series)
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TSC Alliance self-report portal and the TAND-SQ (2021 E-Webinar Series)
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Understanding the TSC genes – TSC genetics made simple (2021 E-Webinar Series)
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The TrustTSC Phase 3 clinical trial for seizures in children and adults with TSC (2022 Research Education Webinar Series)
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Cannabidiol oral solution as an add on therapy in infants with seizures caused by TSC (2021 E-Webinar Series)
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LAM in TSC: surveillance, treatment and research (2021 E-Webinar Series)
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Dermatologic manifestations of TSC (2021 E-Webinar Series)
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Global Collaborations (TANDem) and Updated Consensus Guidelines (2022 World TSC Conference)
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2022 World TSC Conference General Q&A: Panel of Day 1 Presenters
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TSC Community Driven Research Network (TSC Alliance Research Model) (2022 World TSC Conference)
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2022 World TSC Conference General Q&A: panel of day 2 presenters
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Driving the future of TSC – clinical trials and clinical care (2022 World TSC Conference)
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Refractory epilepsy – now what? (2022 World TSC Conference)
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Managing progressive kidney disease (2022 World TSC Conference)
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Transition into adulthood – employment and higher education (2022 World TSC Conference)
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Caregiver resources – self and respite care (2022 World TSC Conference)
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Accessing managed and palliative care throughout your TSC journey (2022 World TSC Conference)
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LAM, treatment options and clinical trials (2022 World TSC Conference)
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Using technology to your advantage (2022 World TSC Conference)
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Other organ manifestations – liver, pancreas, heart and eyes (2022 World TSC Conference)
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Finding your way home – creative housing options / microboards (2022 World TSC Conference)
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Genetics, reproductive issues and impact on relationships (2022 World TSC Conference)
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TAND – ADHD, anxiety, autism (research) (2022 World TSC Conference)
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Accessing early childhood services and non-medical therapies (2022 World TSC Conference)
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Surgical approaches and assessments for epilepsy and SEGA (2022 World TSC Conference)
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Navigating the complexities for special needs care in TSC (2022 World TSC Conference)
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TAND – behavioral interventions and overview of medications (2022 World TSC Conference)
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Gene therapy – hopes and hurdles (2022 World TSC Conference)
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Access to TSC clinical care (2022 World TSC Conference)
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Kidney tumors, cysts & treatment options (2022 World TSC Conference)
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Genetics made simple (2022 World TSC Conference)
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Skin and dental manifestations and treatment options (2022 World TSC Conference)
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Seizure types and treatments (2022 World TSC Conference)
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Racial differences in TSC skin manifestations (2023 Webinar Series)
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TrustTSC study: enrolling children and adults with TSC-associated seizures (2023 Webinar Series)
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TSC Connect Registration Form
Thank you for your interest in the TSC Connect program! By completing the information below, you are agreeing you would like to serve as a TSC Connect Volunteer. Upon receipt
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TSC Clinics
Hamilton, Ontario McMaster Children’s Hospital Directors: Dr. Robyn Whitney and Dr. Elisabetta Trinari Coordinator/ Nurse Practitioner: Cynthia Sloan Birbeck, NP Age Range Seen: 0-18 Clinic Frequency: Monthly Transition Program Available:
FAQ
TSC Alliance-funded testing opportunities
All members can propose compounds for testing and benefit from the shared data generated by TSC Alliance funded studies. Compound nomination form (to be reviewed twice yearly) PIs have
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TSC Academy
TSC Academy is an online educational platform created for the tuberous sclerosis complex (TSC) community. The platform features lessons about the basic, preclinical and clinical science of TSC, how research
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TSC Alliance IEP Intake Form
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TSC Natural History Database and Biosample Repository
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TSC Navigator and Navigation Guides
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Racial differences in the dermatological manifestations of TSC infographic
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Caring for a loved one with facial angiofibroma associated with TSC (2023 Webinar Series)
Facial angiofibroma is one of the most visible signs of tuberous sclerosis complex (TSC) and occurs in approximately 75-80% of individuals with TSC. If left untreated, facial angiofibroma can cause
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Baby Talk in TSC study (2023 Webinar Series)
Tanjala Gipson, MD, Director of the TSC-Associated Neuropsychiatric Disorders Clinic at Le Bonheur Children’s Hospital discusses the Baby Talk in TSC study, which is currently enrolling participants. The study is
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TSC Alert Subscription Form
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Publications using TSC biosamples
Hsieh L, Wen J, Nguyen L, Zhang L, Getz S, Torres-Reveron J, Wang Y, Spencer D, and Bordey A. Ectopic HCN4 expression drives mTOR-dependent epilepsy in mice. Sci Transl Med.
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Why have we helped set up TSC Clinics?
Service to those affected by TSC across the lifespan is part of our mission, so it was natural for the TSC Alliance to encourage healthcare providers to create TSC Clinics
FAQ
What does it mean to be a member of the TSC Alliance?
The TSC Alliance is a membership organization. Anyone can elect annually to become a member by informing the TSC Alliance of their desire to do so and to participate in
FAQ
What role does the TSC Alliance Endowment Fund play?
The TSC Alliance Endowment Fund was established as a nonprofit supporting entity of the TSC Alliance. The TSC Alliance Endowment Fund was specifically chartered to receive gifts that are invested
FAQ
Why is the TSC Alliance a California Corporation (legally known as the National Tuberous Sclerosis Association)?
The TSC Alliance was founded by four mothers in Southern California in 1974 and incorporated in the state of California on March 15, 1975 as the National Tuberous Sclerosis Association.
FAQ
What does the TSC Alliance logo symbolize?
The TSC Alliance logo depicts intertwining colorful lines that represent everyone’s unique journey with TSC. The lines overlap and join together to represent the strength of our community. Each colorful
FAQ
Why was the name changed from Tuberous Sclerosis Alliance to TSC Alliance in 2021?
We changed our name to the TSC Alliance to better support our goals of raising awareness of this disease. The community as well as healthcare professionals refer to this disease
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About the TSC Alliance
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. We drive research, improve quality care and access and
FAQ
Papers published following the 2012 International TSC Consensus Conference
Northrup H et al. Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference, Pediatric Neurology (October 2013) Krueger DA et al. Tuberous Sclerosis
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Clinical management of TSC
Because TSC affects multiple organs, diagnostic studies are recommended for all individuals with a new diagnosis of TSC regardless of their outward manifestations of the disease. For example, published recommendations
FAQ
Surveillance & management recommendations for TSC
For the Newly Diagnosed or Suspected TSC For Individuals Already Diagnosed with TSC Genetics Obtain three-generation family history to assess for additional family members at risk of TSC. Offer genetic
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International TSC Clinics
CANADA Hamilton, Ontario – McMaster Children’s Hospital Directors: Dr. Robyn Whitney and Dr. Elisabetta Trinari Coordinator/ Nurse Practitioner: Cynthia Sloan Birbeck, NP Age Range Seen: 0-18 Clinic Frequency: Monthly Transition
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Step Forward to Cure TSC volunteer interest form
Volunteers needed! Join us as TSC community members, corporate partners and other supporters champion the efforts to fund groundbreaking TSC research, offer critically needed support programs, and increase awareness in
FAQ
Shop for TSC
The TSC Alliance is honored to have several partners who generously contribute of portion of their sales to the organization. This is a great way to contribute to the TSC
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Run with Team TSC
Team TSC is a dedicated group of people running on behalf of the 50,000 people in the US and 1 million worldwide with tuberous sclerosis complex (TSC). Upcoming Team
FAQ
Publications using TSC biosamples
Hsieh L, Wen J, Nguyen L, Zhang L, Getz S, Torres-Reveron J, Wang Y, Spencer D, and Bordey A. Ectopic HCN4 expression drives mTOR-dependent epilepsy in mice. Sci Transl Med.
FAQ
Seizures and TSC: Your data matters!
The TSC Alliance has established a data sharing partnership with Seizure Tracker. Seizure Tracker allows users to log seizure occurrences and other epilepsy care events such as medications, diet, and
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TSC Natural History Database and Biosample Repository
The TSC Natural History Database collects clinical information from people with TSC and connects to our Biosample Repository. Researchers use this vast collection of data to answer questions and find
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TSC clinical trials
Choosing to participate in a clinical trial is an important personal decision. It is often helpful to talk to a physician, family members, or friends about deciding to participate in
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TSC Biosample Repository & Natural History Database
The TSC Natural History Database captures clinical data provided by physicians to document the impact of the disease on a person’s health over his or her lifetime. The TSC Biosample
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Seizures and TSC: your data matters!
The TSC Alliance and Seizure Tracker™ have joined together to advance epilepsy research. With your help, we can connect important seizure and clinical information to enable researchers to improve outcomes and
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TSC Alliance Adult Community Facebook Page
The TSC Alliance Adult Community Facebook Page was created as a place for adults with TSC to connect and get information about resources and upcoming TSC Alliance events for adults.
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TSC Clinic experience of care survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. The survey is anonymous; your answers will not be linked
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Current standards for TSC Clinics and TSC Centers of Excellence
Scope of Relationship Policy TSC Clinic Structure and Expertise Requirements Standard of Care Metrics Questions? Contact Sam Metzger at smetzger@tscalliance.org.
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LGBTQIA+ community and TSC
The TSC Alliance supports people with tuberous sclerosis complex (TSC) who are LGBTQIA+; therefore, the unique and unfortunate challenges experienced in this community are just as important to address as
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Step Forward to Cure TSC Walk in Renton, Washington
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Sunday, April 28 at the Renton Community Center in Renton,
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Step Forward to Cure TSC Walk in Nashville, Tennessee
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, April 27 at Edwin Warner Park in Nashville, TN.
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Step Forward to Cure TSC Walk in Fishers, Indiana
You’re invited to join the TSC Alliance in celebrating our 50th anniversary by attending the Step Forward to Cure TSC event on Saturday, April 13 at Billericay Park in Fishers, IN. Register today
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TSC-associated neuropsychiatric disorders
Apart from the physical manifestations of tuberous sclerosis complex (TSC), most people with TSC are affected by a broad range of behavioral, psychiatric, intellectual, academic, neuropsychological and psychosocial difficulties. Examples
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Living with TSC
Tuberous sclerosis complex (TSC) is a complicated disease. Some people live with few symptoms while others need continual support. Most people with TSC live normal lifespans. Although there is no
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Psychosocial issues in TSC
While other TAND clusters primarily impact the person with tuberous sclerosis complex (TSC), the disease impacts the entire family. The wraparound psychosocial cluster refers to issues that can also affect
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Scholastic difficulties in TSC
Difficulties in school are very common in tuberous sclerosis complex (TSC). Regardless of the intellectual ability, 60% of kids and young adults with TSC will be impacted by scholastic issues.
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Overactivity and impulsivity in TSC
Overactive, impulsive, and restless behaviors are very common in tuberous sclerosis complex (TSC). Even though manifestations typically have lower rates in adulthood than childhood, it may be seen across age,
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Neuropsychological issues in TSC
Approximately 45% to 50% of people with tuberous sclerosis complex (TSC) develop intellectual disabilities. However, profiles of strengths and weaknesses are highly variable person-to-person and are often very uneven within
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Mood and anxiety difficulties in TSC
The rates of mood and anxiety symptoms and disorders are very high in tuberous sclerosis complex (TSC), often arising in adolescence or adulthood. Difficulties in this cluster are often identified
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Eating and sleep difficulties in TSC
There is limited literature on eating-related difficulties and disorders in tuberous sclerosis complex (TSC), but difficulties with eating do present in individuals with TSC. Eating difficulties may be similar to
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Autism in TSC
As with most manifestations of tuberous sclerosis complex (TSC), there is a wide variety of presentation and autism spectrum disorder (ASD) in those with TSC is no different. ASD manifestations
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LGBTQIA+ Community and TSC
The TSC Alliance supports people with tuberous sclerosis complex (TSC) who are LGBTQIA+; therefore, the unique and unfortunate challenges experienced in this community are just as important to address as
FAQ
Issues for men with TSC
Many men with epilepsy will experience changes in sexual drive and performance. For example, many men report a decrease in sex drive and almost one-third of men with epilepsy report
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Issues for women with TSC
Hormonal fluctuations of the menstrual cycle can influence the incidence of some types of seizures. Not all seizures are sensitive to estrogen and progesterone ratios; however, this possibility may influence
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Epilepsy in adults with TSC
People with tuberous sclerosis complex (TSC) face many medical issues as they age, including new-onset seizures or ongoing epilepsy. Studies indicate more than 80% of individuals with TSC will develop
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Spotlight on TSC Alliance
2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join
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Understanding TSC
Learn about the disease, the different manifestations, how it is diagnosed and treatment options available. Click on a link below to learn more. What is TSC? Genetics Clinical Manifestations Prognosis
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Navigating TSC
From diagnosis through the lifespan learn how to proactively navigate medical and non-medical challenges for both those with TSC and their caregivers, while gaining insights from the lived experience of
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Episode 45: The 2023 International TSC Research Conference
On this episode of TSC Now, host Dan Klein recaps the 2023 International TSC Research Conference: Fueling the Future held September 7-9, 2023, in Washington, DC. The conference brought together
TSC Matters Post
Caregiver Experience Survey for Individuals with TSC
Global Perspectives, specialists in recruiting caregivers and patients for scientific studies, are currently looking for caregivers of individuals living with tuberous sclerosis complex (TSC). The purpose of this study is
TSC Alert
TSC Biosample Seed Grants Available
The TSC Alliance announces a funding opportunity for 2023 Biosample Seed Grants to support research using blood, tissue, and/or cells, DNA, or RNA isolated from samples in the TSC Biosample Repository.
FAQ
TSC Alliance Policy on Organizational Participation in Food and Drug Administration Hearings and Meetings
The following information details the TSC Alliance official policy on organizational participation in Food and Drug Administration (FDA) hearings and meetings regarding the regulatory approval of drugs, biological products, and
TSC Matters Post
TSC and Emotion Dysregulation Study for Children 8 to 18 years old and Their Caregivers
What A study to learn more about the effectiveness of a Tuberous Sclerosis Complex (TSC) treatment program called “Regulating Together.” This study will be primarily conducted remotely. There will be
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Deadline Extended! Register now for the 2023 International TSC Research Conference
Registration is now open for the 2023 International TSC Research Conference: Fueling the Future, hosted by the TSC Alliance September 7-9, 2023 at the Omni Shoreham Hotel in Washington, DC. Early bird
TSC Matters Post
Nominate a TSC researcher or clinician for the Manuel R. Gomez Award
The TSC Alliance is now accepting nominations for the 2023 Manuel R. Gomez Award, which will be awarded at the 2023 International TSC Research Conference. The deadline to submit a nomination is
TSC Matters Post
Register today for the 2023 Regional TSC & LAM Conference Series
The TSC Alliance® and The LAM Foundation have joined together once again to co-host four Regional TSC & LAM Conferences in 2023 aimed at individuals with TSC and or LAM
TSC Matters Post
TSC Remote Assessment and Intervention (TRAIN)
TSC Matters Post
Alzheimer’s in TSC study
Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Matters Post
Listen to the latest episode of TSC Now
Check out the newest episode of TSC Now, where host Dan Klein speaks with Justine Ravindranath, Commercial Operations Manager at Nobelpharma America, about the findings of an adult panel hosted
TSC Matters Post
TSC-STEPS trial
TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine if it can prevent seizures and epilepsy in children diagnosed with TSC. The study is
TSC Matters Post
11th Annual TSC Global Awareness Day Scheduled for May 15
On May 15, the TSC Alliance® will join tuberous sclerosis complex (TSC) organizations around the world to observe the 11th Annual TSC Global Awareness Day.
TSC Matters Post
#March4TSCresearch update
Thank you to all our volunteers for your efforts advocating for Tuberous Sclerosis Complex Research Program (TSCRP) earlier this year.
TSC Matters Post
TSC MRI Study
Why are we doing this study? Researchers at Johns Hopkins are seeking participants for an MRI research study where information will be collected to develop a new non-invasive imaging technique
TSC Alert
Save the Date for the 2023 International TSC Research Conference
Mark you calendars now for the 2023 International TSC Research Conference, hosted by the TSC Alliance, scheduled for September 7-9, 2023 at the Omni Shoreham Hotel in Washington, DC. The
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Now Accepting Abstracts for the 2023 International TSC Research Conference
The 2023 International TSC Research Conference Organizing Committee will accept abstracts through a specific Proposal Central portal. We invite you to submit an abstract for consideration for the following opportunities.
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Episode 43: The TSC-STEPS Trial
In this episode of TSC Now, host Dan Klein dives deep on a new clinical trial in tuberous sclerosis complex (TSC) called TSC-STEPS. TSC-STEPS is a study to learn more
TSC Matters Post
TSC MRI Study
Why are we doing this study? Researchers at Johns Hopkins are seeking participants for an MRI research study where information will be collected to develop a new non-invasive imaging technique
TSC Matters Post
Alzheimer’s in TSC Study
Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Matters Post
Baby Talk in TSC
Why are we doing this study? Our team is investigating how TSC impacts a baby’s speech. The study is focused on examining the vocalizations and early language of infants with
TSC Matters Post
Introducing FaceForwardwithTSC.com: An Exciting New Resource for Facial Angiofibroma
Nobelpharma America is proud to announce the launch of FaceForwardwithTSC.com. This new educational resource is curated for those seeking to better understand and manage facial angiofibroma associated with tuberous sclerosis
TSC Matters Post
Watch the 2022 World TSC Conference Videos
All 2022 World TSC Conference videos are now available. By accessing these videos, you can learn more about clinical consensus guidelines on surveillance and treatment of TSC, research updates, caregiver resources
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Save the Date for the 2023 International TSC Research Conference
Mark you calendars now for the 2023 International TSC Research Conference, hosted by the TSC Alliance, scheduled for September 7-9, 2023 at the Omni Shoreham Hotel in Washington, DC. The
TSC Alert
TSCRP Anticipated Funding Opportunities for Fiscal Year 2023
The FY23 Defense Appropriations Act is anticipated to provide funding for the TSCRP to support innovative, high-impact tuberous sclerosis complex (TSC) research. The managing agent for the anticipated funding opportunities
TSC Matters Post
Participate in the TSC Self-Report Portal – New Survey Available
The TSC Alliance has created a Self-Report Portal (SRP) to collect information called Patient-Reported Outcomes (PROs). PROs are any report of the status of a person’s health condition that comes
TSC Matters Post
Alzheimer’s in TSC Study
Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
News Item
0 to 6 months old with TSC needed for research study
Why are we doing this study? Epilepsy is very common in infants diagnosed with tuberous sclerosis complex (TSC) and often very difficult to treat. This study tests if sirolimus, a
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Save the Date for the 2023 International TSC Research Conference
Mark you calendars now for the 2023 International TSC Research Conference, hosted by the TSC Alliance, scheduled for September 7-9, 2023 at the Omni Shoreham Hotel in Washington, DC. The
TSC Alert
Deadline Friday: TSC Biosample Seed Grants Available
The TSC Alliance announces a funding opportunity for 2022 Biosample Seed Grants to support research using blood, tissue, and/or cells, DNA, or RNA isolated from samples in the TSC Biosample Repository.
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
TSC Biosample Seed Grants Available
The TSC Alliance announces a funding opportunity for 2022 Biosample Seed Grants to support research using blood, tissue, and/or cells, DNA, or RNA isolated from samples in the TSC Biosample Repository.
TSC Matters Post
Alzheimer’s in TSC Study
Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
Resource
Episode 39: Inspiring a World TSC Community
In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part two, Dan
Resource
Episode 38: Galvanizing a World TSC Community
In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part one Dan
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
FY22 TSCRP Funding Opportunities Now Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2022 grant cycle. Three award mechanisms are available this year: Exploration – Hypothesis Development Award (up to
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
Resource
Episode 35: The Past, Present and Future of Autism Research in TSC
In this episode of TSC Now, host Dan Klein recognizes World Autism Month by taking a deep dive on the past, present and future of autism spectrum disorder (ASD) research
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Alert
TSC Alliance® Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
Resource
Episode 33: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC
In a very special early episode of TSC Now, host Dan Klein recognizes International #EpilepsyDay and the kickoff of the second annual Seizure Action Plan Awareness Week. In November 2020, a collaboration
Resource
Episode 32: The 2022 World TSC Conference
In the first episode of TSC Now in 2022, host Dan Klein provides an overview of the upcoming 2022 World TSC Conference, co-hosted by Tuberous Sclerosis Complex International (TSCi), which
Resource
Episode 31: The Present and Future of TSC & LAM Research
In the final episode of TSC Now in 2021, host Dan Klein recaps the 2021 Virtual International TSC & LAM Research Conference: Driving Discoveries Beyond Boundaries, presented by Greenwich Biosciences and the
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
Resource
Refractory epilepsy in adults with TSC (2021 E-Webinar Series)
Resource
Episode 29: The TSC Navigator
In Episode 29 of TSC Now, host Dan Klein highlights TSC Navigator, an easy-to-use, interactive online tool to help guide individuals and families through the complexities of tuberous sclerosis complex
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Matters Post
TSC Researcher Spotlight – Katarzyna “Kasia” Klonowska
Katarzyna “Kasia” Klonowska, PhD, is a 2020 recipient of the TSC Alliance® Postdoctoral Fellowship Award. Kasia is a post-doctoral fellow in the laboratory of David Kwiatkowski, MD, PhD at Brigham
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Matters Post
TSC Researcher Spotlight – Felix Chan, PhD
The Developmental Synaptopathies Consortium (DSC) is composed of a group of medical centers throughout the US studying three related rare genetic syndromes that often cause autism spectrum disorder and intellectual
Resource
Episode 26: The Road to Newborn Screening in TSC
In Episode 26 of TSC Now, host Dan Klein takes a deep dive into one of the newer and exciting frontiers in TSC research: Newborn Screening. Last Fall, the TSC
TSC Matters Post
Ongoing Quality of Life Study for Adults with TSC
See below for ongoing study.
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Register Your Interest in the International TSC & LAM Research Conference
The TSC Alliance and The LAM Foundation will be co-hosting the 2021 Virtual International TSC & LAM Conference: Driving Discoveries Beyond Boundaries, presented by Greenwich Biosciences and the Rothberg Institute of Childhood Diseases, on October 28-30,
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
Resource
Episode 23: Autism Spectrum Disorder in TSC and TACERN
In Episode 23 of TSC Now, host Dan Klein recognizes World Autism Month and Autism Acceptance Month by learning more about autism spectrum disorder (ASD) in tuberous sclerosis complex (TSC).
TSC Matters Post
Ongoing Quality of Life Study for Adults with TSC
See below for ongoing study.
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Research Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference
TSC Alert
Apply Today for a 2021 TSC Alliance Early-Stage Investigator Research Grant or Postdoctoral Fellowship
The TSC Alliance endeavors to stimulate, support, and coordinate research that will lead to a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. In 2021
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Research Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference
TSC Alert
HRA Open User Guide for TSC Alliance Grant Awardees
HRA Open is a web-based service sponsored by the Health Research Alliance (HRA) that promotes open access by linking your award information with PubMed Central (PMC) so you can deposit
TSC Alert
Announcing the 2021 TSC Alliance Early-Stage Investigator Research Grant & Postdoctoral Fellowship Guidelines
The TSC Alliance endeavors to stimulate, support, and coordinate research that will lead to a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. In 2021
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news,
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/).
TSC Alert
Resarch Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021. The conference will
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Register Your Interest in the International TSC Research Conference 2020
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. Learn More
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021.
TSC Alert
EPISTOP Results on Prevention of Epilepsy in TSC infants
EPISTOP (Long-term, prospective study evaluating clinical and molecular biomarkers of EPIleptogenesiS in a genetic model of epilepsy – Tuberous sclerOsis comPlex) is a European consortium that has been studying the potential benefits of early
TSC Matters Post
December TSC Now Episode
In the December episode of TSC Now, a podcast by the TSC Alliance, Kelly Knupp, MD of the University of Colorado describes what infantile spasms (IS) are, why they are
TSC Matters Post
Meet Some of the TSC Alliance Research Grant Recipients
New research grants awarded by the TSC Alliance in 2020:
TSC Matters Post
Re-Watch All of the Virtual TSC & LAM Conference Sessions
Did you miss our three virtual conferences earlier this year? Catch up on all the previous sessions! Also, be sure to check out the Virtual Exhibit Hall for great resources from our
TSC Matters Post
Join Our Future Leaders for a Young Adults with TSC Webinar
Are you a Young Adult with TSC (age 17-25)? Then join us next week for a webinar presented by the TSC Alliance Future Leaders!
TSC Matters Post
Join Us for Baking for a TSC Cure
Saturday, December 12, 2020 • 6:00 pm ET Chef Rivera, Head Pastry Chef at Bachour Miami and Founder of Women Chefs 305, will lead an hour-long virtual baking class on Zoom starting at
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Register Your Interest in the International TSC Research Conference 2020
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. Learn More
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled October 28-30, 2021. The conference will focus on structured,
Resource
Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM
In episode 18 of TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate Professor in the Division of Pulmonology, Critical Care and Sleep Medicine at the University of
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, the TSC Alliance’s Science and Medical Committee, drawing on opinions from key leaders in TSC clinical care,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
Resource
Episode 17: Gene Therapy in TSC
In episode 17 of TSC Now, host Dan Klein talks to Xandra Breakefield, PhD, Professor of Neurology at Harvard Medical School and a geneticist, specializing in neurology & tadiology at
TSC Matters Post
Join Us For the Final Virtual TSC & LAM Conference on November 7!
The third and final Virtual TSC and LAM Conference on Saturday, November 7, 2020. Register now! Did you miss either of the first two virtual conferences? Catch up on all the
TSC Matters Post
Participate in a Worldwide Survey on Access to TSC Medications
Tuberous Sclerosis Complex International (TSCi) invites you to participate in a brief worldwide survey about accessing medications for tuberous sclerosis complex (TSC). The survey will take 5-10 minutes to complete.
TSC Matters Post
Participate in the TSC Biosample Repository Project
To better understand why people are impacted so differently by this disorder and with the aim to eventually be able to better predict its course, our organization invested in a
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Funding Opportunity: Now Accepting Proposals for TSC Biosample Research
The TSC Alliance is pleased to announce a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The award may support
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
TSC Alliance Contributes Data to RDCA-DAP
The TSC Alliance has recently contributed data to The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP), funded by the U.S. Food and Drug Administration and developed by the Critical
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
TSC Matters Post
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
TSC Alert
TSC Alliance Contributes Data to RDCA-DAP
The TSC Alliance has recently contributed data to The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP), funded by the U.S. Food and Drug Administration and developed by the Critical
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Matters Post
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her
TSC Matters Post
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outbursts
Resource
Episode 13: TSC Global Awareness Month in the Age of COVID-19
In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one full year of podcasting by once again reaching out to some of the Tuberous Sclerosis
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news,
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
Currently, biosample collections have been paused. However, patients with TSC can still participate in this initiative. The TSC Alliance is able to consent patients for the project via a 20-minute
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC