Search Results for: What is TSC

ABOUT  |  ONBOARDING  |  CURRENT VOLUNTEERS  |  NETWORKING  |  RECOGNITION  |  SUPPORT  |  MARCH ON CAPITOL HILL  |  FAQ’s Onboarding We’re thrilled to have you join the TSC Alliance volunteer

ABOUT  |  ONBOARDING  |  CURRENT VOLUNTEERS  |  NETWORKING  |  RECOGNITION  |  SUPPORT  |  MARCH ON CAPITOL HILL  |  FAQ’s Current Volunteers Welcome to the Current Volunteer section of the Community

We are so grateful for the work and progress the TSC Alliance has made over the past 20 years. Anya’s Accelerator will provide an opportunity to advance TAND research and

Are you providing care to a patient with a suspected tuberous sclerosis complex (TSC) diagnosis? Here are five things you need to know: Early diagnosis and management are critical to

This site is intended to provide basic information about tuberous sclerosis complex (TSC). It is not intended to, nor does it, constitute medical or other advice. Readers are warned not

Approved by Executive Committee:  May 4, 2018 Revisions Approved by Executive Committee:  January 30, 2019 Revisions Approved by Executive Committee: May 2, 2025 The TSC Alliance (or “we,” “us,” “our”)

TSC Alliance 8737 Colesville Road, Suite 400 Silver Spring, Maryland 20910-4487 GET DIRECTIONS Staff Directory Phone Our phones are available 9-5 pm ET, Mon-Fri. Tel: (301) 562-9890 Toll-Free: 1-800-225-6872 Emergency

The TSC Alliance’s “Navigation Guides” provide essential information to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan. TSC uniquely affects each individual

The TSC Alliance has made our website more accessible, thanks to a partnership with accessiBe, a company devoted to educating the world about the importance of inclusivity and web accessibility.

50 Forward Fund The last 50 years have been transformative. The TSC Alliance has funded more than $39 million in TSC research and through these investments have significantly expanded our

Tributes Tribute gifts can be made in honor or in memory of individuals. It is a wonderful way to send a birthday or anniversary wish, or congratulations for retirement, a

Media members and anyone seeking additional information about tuberous sclerosis complex or the TSC Alliance may direct inquiries to: Dan Klein Senior Director, Communications TSC Alliance 8737 Colesville Road, Suite

Products Stylo Bracelet Aimant Bouteille How To Order To place an order, please email TSCanadaST@gmail.com and indicate how many and which items you would like to order.  Payment will be

There is no limit to the many different ways you can personally help to raise funds and awareness for TSC. You can easily turn a fun activity, a birthday party

A donation to Tuberous Sclerosis Canada (TS Canada ST) can make a difference in the lives of those affected by tuberous sclerosis complex (TSC) by funding research and educational forums,

Tuberous Sclerosis Canada is seeking volunteers to help us with our efforts to combat tuberous sclerosis complex (TSC). Your efforts will help us establish local, provincial and national connections for

No current events scheduled.   Past Events Did you miss the TSC Canada ST & TSC Alliance Research Collaboration Webinar?  Watch it here:

Brain & Epilepsy Organizations Canadian Epilepsy Alliance: www.epilepsymatters.com International Bureau for Epilepsy: www.ibe-epilepsy.org Epilepsy Foundation: www.epilepsyfoundation.org BC Epilepsy Society: www.bcepilepsy.com Montreal Neurological Institute and Hospital: www.mni.mcgill.ca Childrens Neurology: www.childneurologysociety.org Epilepsy

Biosample Repository and Natural History Database The TSC Natural History Database collects clinical data used to document the impact of TSC on a person’s health, over his or her lifetime. 

Bylaws TSCST bylaw Financial Statements Click here to access our latest Canadian Registered Charity Return

Cathy Evanochko, Chair Cathy Evanochko is one of the founding board members of the organization. In the days prior to the availability of the Internet, an article about Cathy’s family

Mission TS Canada ST is a voluntary, non-profit, charitable organization dedicated to the principles of raising public awareness of tuberous sclerosis complex, encouraging mutual support between individuals with TSC and

Alianzas en países que son hispanoparlantes  TSC Alliance of Mexico – Alianza de Esclerosis Tuberosa en México  Facebook: https://www.facebook.com/tsallianceofmexico   Asociación Argentina de Esclerosis Tuberosa (ARGET) Email:  asociacionarget@gmail.com Facebook: https://www.facebook.com/AsociacionArget  

Clínicas especializadas en el CET que cuentan con un doctor o un empleado que habla español con fluidez: California – Loma Linda The Tuberous Sclerosis Clinic at Loma Linda University

Please complete the form below to share your story of hope. By sharing your story, you help inspire hope in everyone with tuberous sclerosis complex (TSC) and let them know

The TSC Alliance grants the Manuel R. Gomez Award to individuals who have made a significant impact on our understanding of TSC in research, and/or have impacted the delivery of

The TSC Alliance International Scientific Advisory Board (ISAB) is comprised of both U.S. and international leaders in all areas of science relating to TSC research. The mission of the ISAB

By bringing together researchers from different disciplines and representing basic, translational, and clinical science, TSC Alliance-hosted research conferences provide a truly unique space to foster collaborations, spark new ideas and

The TSC Clinical Research Consortium has been the cornerstone of Federally funded research efforts in the US for the past decade. Only through the collaborative research efforts of the TSC

The Natural History Database and Biosample Repository has been instrumental in advancing my LAM research. The extensive resources within the database have been valuable for my investigations, and the accessibility

The Natural History Database is a fantastic resource for research in TSC. It is an incredible resource for those in epidemiology, given its unparalleled size. It is an incredible resource

The TSC Alliance and the Preclinical Consortium have been instrumental partners in establishing the preclinical models and data necessary for development of our candidate therapeutic. The historical data sets, knowledge

I will forever be grateful to the TSC Alliance for funding my research and for their support throughout the grant process. Having a leading TSC organization believe in my work

The TSC Alliance draws physicians, researchers, industry partners, and the TSC community into the research process, and thus they are uniquely positioned to help drastically alter the course of this

Help us create a future where everyone with TSC can live their fullest potential The TSC Alliance offers satisfying careers for people ready to bring their talent and skills to

Operating Board of Directors The TSC Alliance Board of Directors has general oversight, fiduciary, policy development and ambassadorial responsibilities. The board develops and approves strategic plans that define the framework

To create a future where everyone affected by tuberous sclerosis complex can live their fullest lives. 2024 – 2028 Strategic Plan Throughout 2023, members of the TSC Alliance Board of

Tuberous sclerosis complex (TSC) is a complicated disorder that requires lifelong care from a variety of specialists. The TSC Alliance provides the resources below to connect healthcare providers with TSC

A gift to the TSC Alliance will make a tangible difference in the lives of those affected by tuberous sclerosis complex (TSC) in a variety of ways. Please look at

The TSC Alliance is a membership-based organization, which means members participate in the corporate governance of the organization, which includes electing the Board of Directors. As such, members have a

Your voice makes a difference! $121 million appropriated for the TSCRP since 2002 $5.725 million to support clinical care and research at TSC centers in four states 120 volunteer advocates

The tuberous sclerosis complex (TSC) community is pivotal to advancing research. When you enroll in a clinical trial, share your medical data, donate biosamples or give voice to your lived

Champion our cause:  Join the TSC Alliance volunteer movement! The tuberous sclerosis complex (TSC) community is the TSC Alliance’s strongest ally. We rely on our dedicated volunteers to help drive

Our professional Support Navigators can help guide you along your unique journey. They can help answer your questions, process, and understand your diagnosis, help find TSC recognized specialists, and discuss

Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within your adult life regardless of when you first received your diagnosis. The TSC Alliance is here to help.

The TSC Alliance is supported by a corps of dedicated volunteer leaders across the country. Whether you are dealing with a new diagnosis or are looking for local resources, they

The TSC Alliance recognizes parents and young adults often face many educational and school-related difficulties. The first step in becoming an advocate is understanding your child’s legally protected rights. The

The Bcureful Travel Fund® at the TSC Alliance underwrites the TSC Travel and Lodging Patient Assistance Program, which is administered by the National Organization for Rare Disorders (NORD). This travel

Connect with TSC Alliance support navigators, our volunteer support network and TSC clinicians to help guide you along your unique journey. Click on a link below to learn more. FIND

Dysregulated behaviors, including aggression, temper tantrums, and self-injury, represent the greatest concerns and burdens to families who live with TSC. These behaviors are therefore a common reason for referral to

In addition to your primary care physician and team of specialists, your local pharmacist and insurance case manager are important members of your healthcare team. Being proactive in establishing these

Many people with tuberous sclerosis complex (TSC) rely on several medications to treat different manifestations of the disease. Disruptions to medication can have negative impacts on an individual with TSC

Medication Access Issues Medication Resources Types of Pharmacies

Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within the life of the individual regardless of when first diagnosed. It is essential to understand acknowledging that life

All caregivers should prepare for the possibility of grief or bereavement during the care of a loved one. Caregivers naturally become deeply emotionally invested in the individuals for whom they

As people with tuberous sclerosis complex (TSC) age and transition from pediatrics to adult care, certain manifestations which may or may not have been problematic during childhood or adolescence now

It is common for medical providers to be unfamiliar with tuberous sclerosis complex (TSC), including neurologists and pediatricians. It is crucial to have a local neurologist and pediatrician involved in

SUDEP stands for sudden unexpected death in epilepsy. It is a rare but fatal complication of epilepsy with no other known cause of death. While the exact cause of SUDEP

During the transition phase and estate planning, families ought to consider housing options that would best serve the needs of their loved one with tuberous sclerosis complex (TSC). As these

What is estate and financial planning? This topic can seem overwhelming with the breadth of information available on the topic. This guide will help you get familiar with the process

Epilepsy is a very common manifestation of tuberous sclerosis complex (TSC), occurring in 84% of patients registered in the TSC Alliance Natural History Database. Potential complications of epilepsy include seizure

Epilepsy is a common manifestation of tuberous sclerosis complex (TSC). More than 80% of individuals with TSC will have seizures at some point during the journey, most often beginning in

Infantile spasms or epileptic spasms are severe seizure disorders that may affect infants with tuberous sclerosis complex (TSC). About 30% of children with TSC may start experiencing these seizures. The

Several types of brain abnormalities may be seen in individuals with tuberous sclerosis complex (TSC), including cortical tubers, subependymal nodules (SEN), and subependymal giant cell astrocytoma (SEGA). Some individuals will

You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding

Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and

Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance

It is common for medical providers to be unfamiliar with TSC, including neurologists, pediatricians and primary care providers (PCPs). It is crucial to have a local healthcare team involved in

Sclerotic bone lesions are commonly observed in individuals with tuberous sclerosis complex (TSC) when high-resolution chest computed tomography (CT) is performed as surveillance for possible lymphangioleiomyomatosis (LAM) or abdominal magnetic

Cysts and angiomyolipomas similar to those found in the kidneys have been observed in other organs, such as the adrenal gland, liver, lung, ovary and pancreas. These lesions are usually

Oral involvement in TSC can include gum fibromas and dental pits. The fibromas appear as overgrowth of the gums and can be quite extensive, although this finding is not common

Tumors in the heart called rhabdomyomas are common in infants with tuberous sclerosis complex (TSC), affecting an estimated 47-67% of infants with TSC. Rhabdomyomas can affect cardiac function in some

Lung involvement is more common in women with TSC than men. The average age of onset is during the childbearing years, although lung involvement can occasionally occur in teenagers with

Most people with tuberous sclerosis complex (TSC) have changes in their skin. Nearly all people with TSC develop at least one skin feature during their lifetime, and many will have

Most individuals (greater than 80%) with tuberous sclerosis complex (TSC) will develop some form of renal (kidney) disease during their lifetime. There are three renal disorders in TSC: renal cysts,

Nearly 50% of individuals with TSC have involvement of one or both eyes, but visual loss is uncommon. This may be higher as many individuals with TSC do not receive

One of the most common neurological features of tuberous sclerosis complex (TSC) are seizures. This feature occurs in 84% of individuals with TSC. In some cases, seizures can start as

Multiple manifestations can occur in the brain of someone with TSC. Click on an item listed below to learn more: Brain abnormalities  Epilepsy/seizure disorders In addition to these physical challenges,

The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC

In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC diagnostic criteria published in 2013. Clinical features of TSC

Most people with TSC will live a normal life span. Although there is no cure, there is hope. Research has proven that early diagnosis and intervention(s) are key for optimizing

Because TSC affects no two people the same, there is no sure way to predict where and how the disorder will manifest. To better understand its potential impact, click below

TSC affects multiple organs throughout the lifetime. Both the TSC1 and TSC2 genes hold the instructions for creating proteins called hamartin and tuberin, respectively.  These proteins form a complex (essentially

While no one’s experience with tuberous sclerosis complex (TSC) is exactly the same, there are common threads the TSC community shares: overcoming adversity, finding joy in moments small and large,

Embarking on the caregiver journey for individuals with tuberous sclerosis complex (TSC) involves thoughtful consideration and planning. The sections below provide valuable insights into key aspects that caregivers often navigate.

Navigating tuberous sclerosis complex (TSC) involves adopting a strategic healthcare approach. As medical providers often lack familiarity with TSC, it’s crucial to form a local healthcare team to serve as

Managing tuberous sclerosis complex (TSC) across the lifespan requires attentive surveillance and effective strategies. Delve into the challenges and considerations present in both the early and childhood years, as well

Caregivers and individuals with tuberous sclerosis complex (TSC) often meet challenges, and mental health plays a crucial role in navigating these complexities. This section explores valuable insights and resources for

Bienvenido a la página de la TSC Alliance; la alianza que sirve como una fuente de esperanza y apoyo para las personas con el complejo de esclerosis tuberosa (CET) y