Skip to content
TSC Alliance
  • About Us
    • About the TSC Alliance
    • Our Vision
    • Our Team
    • Our Leadership
    • Our Results
    • Corporate Policies
    • FAQs
    • Careers
  • Healthcare Providers
  • Researchers
    • Research Strategy
    • Grants & funding
    • Preclinical research
    • Natural History Database
    • Biosample Repository
    • Clinical Research Consortium
    • Research conferences
    • TSC Alert
    • International Scientific Advisory Board
    • Manuel R. Gomez Award
  • En Español
  • International
  • en English
    • en English
    • fr French
    • es Spanish
Search
  • Understanding TSC
    • What is TSC?
    • Genetics
    • Clinical Manifestations
    • Prognosis
    • Diagnostic criteria
    • Surveillance & treatment
  • Navigating TSC
    • Beginning Your Journey
      • Prenatal diagnosis
      • Childhood diagnosis
      • Adult diagnosis
    • Navigating Life Stages
      • Coordination of care
      • Caregiver resources
      • Surveillance & management
      • Mental health
    • Pharmacy Resources
      • Medication access issues
      • Medication resources
      • Types of pharmacies
    • TSC-associated neuropsychiatric disorders (TAND)
    • Stories of Hope
  • Find Support
    • Find a TSC Clinic
    • Bcureful travel & lodging assistance
    • Educational support
    • Community support network
    • Adult support
    • Connect with a Support Navigator
  • Resources
    • Resource Library
    • TSC Academy
  • Get Involved
    • Volunteer
      • Community Leadership Hub
    • Participate in research
      • Anya’s Accelerator
      • Reproductive and Perinatal Health Initiative
      • TSC Biosample Repository & Natural History Database
      • Seizures and TSC: your data matters!
      • TSC clinical trials
    • Government advocacy
    • TSC Matters E-Newsletter
    • Become a member
    • Join Team TSC
    • Step Forward to Cure TSC
    • Ways to give
  • News
  • Events
  • Donate
Search

TSC Matters

Ongoing TSC Clinical Trials

Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study!

Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study! Toileting abilities are reported by families to be one of the most important aspects of daily living affected by

Read More: Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study!

Join the WINGS Study!

Are you a parent of a child with a genetic syndrome facing challenging behaviors...

Read More: Join the WINGS Study!

TSC-STEPS Trial

TSC-STEPS is a study to learn more about a drug known as Sirolimus and determin...

Read More: TSC-STEPS Trial

Ongoing Early Intervention and Autism trials

See below for ongoing trials....

Read More: Ongoing Early Intervention and Autism trials

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Read More: Transition Readiness Survey

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 (R...

Read More: Rainbow Study (Remote Assessment an Intervention for Behavior Problems in Kids with TSC)

Ongoing Sleep Studies

See below for ongoing trials....

Read More: Ongoing Sleep Studies

Understanding caregiver experiences of sleep management difficulties in individuals with tuberous sclerosis complex

Email m.shabetai@bham.ac.uk to participate in this study....

Read More: Understanding caregiver experiences of sleep management difficulties in individuals with tuberous sclerosis complex

Caregiver Experience Survey for Individuals with TSC

Global Perspectives, specialists in recruiting caregivers and patients for scien...

Read More: Caregiver Experience Survey for Individuals with TSC

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is develop...

Read More: Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

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 Compl...

Read More: TSC and Emotion Dysregulation Study for Children 8 to 18 years old and Their Caregivers

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is develop...

Read More: Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Current Clinical Trials

See below for ongoing clinical trials. For a full list of clinical trials go to ...

Read More: Current Clinical Trials

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Alzheimer’s in TSC study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Read More: Alzheimer’s in TSC study

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

TSC-STEPS trial

TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine...

Read More: TSC-STEPS trial

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Bcureful’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Pr...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

Read More: TSC MRI Study

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

Read More: TSC MRI Study

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Read More: Transition Readiness Survey

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Read More: Alzheimer’s in TSC Study

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Baby Talk in TSC

Why are we doing this study? Our team is investigating how TSC impacts a baby’...

Read More: Baby Talk in TSC

Participate in the TSC Self-Report Portal – New Survey Available

The TSC Alliance has created a Self-Report Portal (SRP) to collect information c...

Read More: Participate in the TSC Self-Report Portal – New Survey Available

Participants Needed for a Study Using AI to Predict the Onset of Seizures

Do you or your loved one suffer from uncontrolled epileptic seizures? Using Arti...

Read More: Participants Needed for a Study Using AI to Predict the Onset of Seizures

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Read More: Transition Readiness Survey

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Read More: Alzheimer’s in TSC Study

Ongoing Epilepsy Trial

See below for the upcoming trial....

Read More: Ongoing Epilepsy Trial

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Read More: Transition Readiness Survey

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Read More: Alzheimer’s in TSC Study

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Read More: Transition Readiness Survey

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Ongoing Epilepsy Trial

See below for the upcoming trial....

Read More: Ongoing Epilepsy Trial

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Read More: Ongoing Facial Angiofibroma Trial

Ongoing Epilepsy Trial

See below for the upcoming trial....

Read More: Ongoing Epilepsy Trial

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Read More: Ongoing Quality of Life Study for Adults with TSC

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Read More: Ongoing Facial Angiofibroma Trial

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 infectio...

Read More: Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Read More: Ongoing Quality of Life Study for Adults with TSC

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Read More: Ongoing Facial Angiofibroma Trial

Ongoing Epilepsy Trial

See below for the upcoming trial....

Read More: Ongoing Epilepsy Trial

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Read More: Ongoing Facial Angiofibroma Trial

Ongoing Epilepsy Trial

See below for the upcoming trial....

Read More: Ongoing Epilepsy Trial

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Currently Recruiting Sibling Participants

Do you have a brother or sister with autism? Share your voice. Spread more aware...

Read More: Currently Recruiting Sibling Participants

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Read More: Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Read More: Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

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? A...

Read More: Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Ongoing Genetic Study

See below for the ongoing study....

Read More: Ongoing Genetic Study

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Read More: Ongoing Facial Angiofibroma Trials

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

Read More: Epilepsy Trial

Transition of Epilepsy Care Questionnaire

Open to adults or caregivers of a child or dependent adult with TSC and seizures...

Read More: Transition of Epilepsy Care Questionnaire

Tuberous Sclerosis Research Opportunity

  Please help us better understand factors that impact the decision to unde...

Read More: Tuberous Sclerosis Research Opportunity

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? A...

Read More: Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

Read More: Epilepsy Trial

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Read More: Behavioral Research – Open to families with children with and without TSC

Ongoing Genetic Studies

See below for ongoing studies....

Read More: Ongoing Genetic Studies

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Read More: Ongoing Facial Angiofibroma Trials

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Read More: Tuberous Sclerosis Research Opportunity

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Read More: Behavioral Research – Open to families with children with and without TSC

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Read More: Ongoing Facial Angiofibroma Trials

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Read More: Tuberous Sclerosis Research Opportunity

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Ongoing Biosample Studies

See below for ongoing studies....

Read More: Ongoing Biosample Studies

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Read More: Ongoing Facial Angiofibroma Trials

Ongoing Epilepsy Trials

See below for ongoing trials....

Read More: Ongoing Epilepsy Trials

Are you an Adult with TSC or a Caregiver of an Adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Read More: Are you an Adult with TSC or a Caregiver of an Adult with TSC?

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Read More: SPARK for Autism Research Study, Boston Children’s Hospital

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Read More: Baby Brain Imaging and Behavior Study (Baby BIBS)

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Read More: Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Read More: Researcher Seeking Donation of Tissue Samples from Your Surgery

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Read More: Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Read More: Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Read More: Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Read More: Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Read More: Engage Therapeutics Clinical Trial

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

Read More: Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Read More: SPARK for Autism Research Study, Boston Children’s Hospital

Are you an adult with TSC or a caregiver of an adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Read More: Are you an adult with TSC or a caregiver of an adult with TSC?

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Read More: Baby Brain Imaging and Behavior Study (Baby BIBS)

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Read More: Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Read More: Researcher Seeking Donation of Tissue Samples from Your Surgery

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Read More: Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Read More: Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Read More: Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Read More: Engage Therapeutics Clinical Trial

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Read More: Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

Read More: Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Read More: Engage Therapeutics Clinical Trial

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Read More: Baby Brain Imaging and Behavior Study (Baby BIBS)

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Read More: Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Read More: Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

Read More: Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

Read More: Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Read More: SPARK for Autism Research Study, Boston Children’s Hospital

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Read More: Baby Brain Imaging and Behavior Study (Baby BIBS)

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Read More: Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Read More: Researcher Seeking Donation of Tissue Samples from Your Surgery

Clinical Trial for individuals diagnosed with Tuberous Sclerosis Complex (TSC) and cutaneous angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Read More: Clinical Trial for individuals diagnosed with Tuberous Sclerosis Complex (TSC) and cutaneous angiofibromas

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Read More: Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Read More: Engage Therapeutics Clinical Trial

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

Read More: Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Read More: Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)

SPARK for Autism Research Study, Boston Children’s Hospital (Valid through March 2020)

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Read More: SPARK for Autism Research Study, Boston Children’s Hospital (Valid through March 2020)

Researcher Seeking Donation of Tissue Samples from Your Surgery (Valid through June 2020)

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Read More: Researcher Seeking Donation of Tissue Samples from Your Surgery (Valid through June 2020)

Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Read More: Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Read More: Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
  • Topics
    • 45th Anniversary Flashback
    • Volunteer Spotlight
    • Research Updates
    • Upcoming Events
    • Ongoing TSC Clinical Trials
    • News & Announcements
    • Note from the President & CEO
    • Government Advocacy Updates
    • Volunteer Opportunities
    • Global Alliance Update
    • TSC Now Podcast
    • International
    • We're Hiring
    • 50th Anniversary Spotlight
    • Research Study
  • Posts by Date
    • March 2025
    • November 2024
    • October 2024
    • July 2024
    • May 2024
    • March 2024
    • October 2023
    • August 2023
    • April 2023
    • February 2023
    • January 2023
    • December 2022
    • September 2022
    • June 2022
    • April 2022
    • February 2022
    • December 2021
    • October 2021
    • August 2021
    • June 2021
    • April 2021
    • February 2021
    • December 2020
    • October 2020
    • August 2020
    • June 2020
    • April 2020
    • February 2020
    • December 2019
    • October 2019
    • August 2019
    • June 2019
    • April 2019



Subscribe to Receive TSC Matters via Email:

Subscribe
TSC Alliance

TSC Alliance
8737 Colesville Road, Suite 400
Silver Spring, Maryland 20910-3921 USA
800.225.6872 (Toll-Free) 301.562.9890
info@tscalliance.org
EIN: 95-3018799

Contact Us | Media | Disclaimer | Privacy Policy | Terms of Use

  • Facebook
  • Twitter
  • YouTube
  • Instagram
  • LinkedIn
  • Tiktok
  • Inspire
  • Threads
BBB Accredited Charity Charity Navigator - Four Star Great Non-Profits 2022 Top rated Platinum Transparency 2023 - Candid iSAN NORD Touch Neurology Advancing Collaboration Pledge RDDC Rare Epilepsy Network Neurology Live Strategic Alliance Rare Foundation Alliance Seizure Action Plan Coalition ATS PAR

This website is made possible through sponsorships from: Jazz Pharmaceuticals Nobel Pharma Liva Nova Mallinckrodt Pharmaceuticals Marinus Upshire Smith Mass Mutual

The information you obtain at this site is not, nor is it intended to be, medical advice.   Full Disclaimer  |  © 2025 TSC Alliance  |  Website by Teramark

Search
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

Popular Search Terms:

  • What is TSC?
  • Find a TSC clinic
  • Diagnostic criteria
  • TSC-associated neuropsychiatric disorders (TAND)
  • Brain abnormalities
  • Participate in research
Close
  • Home
  • Understanding TSC
    ▼
    • What is TSC?
    • Genetics
    • Clinical Manifestations
    • Prognosis
    • Diagnostic criteria
    • Surveillance & treatment
  • Navigating TSC
    ▼
    • Prenatal diagnosis
    • Childhood diagnosis
    • Adult diagnosis
    • Coordination of care
    • Caregiver resources
    • Mental health
    • Surveillance & management
    • Medication access issues
    • Medication resources
    • Pharmacy Resources
  • TAND
    ▼
    • TAND Overview
    • Autism in TSC
    • Dysregulated behaviors
    • Eating and sleep difficulties in TSC
    • Mood and anxiety difficulties in TSC
    • Neuropsychological issues in TSC
    • Overactivity and impulsivity in TSC
    • Scholastic difficulties in TSC
    • Psychosocial issues in TSC
  • Stories of hope
  • Find Support
    ▼
    • Find a TSC Clinic
    • Bcureful travel & lodging assistance
    • Educational support
    • Community support network
    • Connect with a Support Navigator
  • Resources
  • Get Involved
    ▼
    • Volunteer
    • Community Leadership Hub
    • Participate in research
    • Anya’s Accelerator
    • TSC Biosample Repository & Natural History Database
    • Seizures and TSC: your data matters!
    • TSC clinical trials
    • Government advocacy
    • TSC Matters E-Newsletter
    • Become a member
    • Join Team TSC
    • Ways to give
  • News
  • Events
  • Donate
  • About Us
    ▼
    • About the TSC Alliance
    • Our Vision
    • Our Team
    • Our Leadership
    • Our Results
    • Corporate Policies
    • FAQs
    • Careers
  • Healthcare Providers
  • Researchers
    ▼
    • Research Strategy
    • Grants & funding
    • Preclinical research
    • Natural History Database
    • Biosample Repository
    • Clinical Research Consortium
    • TSC Alert
    • Research conferences
    • Manuel R. Gomez Award
  • En Español
  • International
This website uses cookies to improve your user experience. By using this site you agree to our use of cookies. Please read our Privacy Policy to learn more.