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Find a TSC Clinic

The TSC Alliance supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. Use the resources below to find a TSC

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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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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

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.

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Clinical Research Consortium

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

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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

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

FAQ

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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Find Support

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

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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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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

TSC Matters Post

Current Clinical Trials

See below for ongoing clinical trials. For a full list of clinical trials go to the Clinical Trial Finder to find a trial that may best suit your needs.

Resource

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 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

TSC Alert

Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

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

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

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

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Matters Post

TSC Research: Our Vision for 2020

As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Alert

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.

TSC Matters Post

TSC Clinical Research Consortium Update

To initiate and implement clinical studies more quickly and effectively, researchers from five TSC Clinics together with the TSC Alliance formed the TSC Clinical Research Consortium in 2012. Since then,

TSC Alert

The New TSC Alert

Welcome to the new TSC Alert, a monthly electronic newsletter for TSC researchers. It provides updates on TSC research resources, conferences and clinical studies, as well as news that may be

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Five things healthcare providers should know

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

TSC Matters Post

50th Anniversary Spotlight: Susan McBrine

Susan McBrine is one of the four founding moms of the National Tuberous Sclerosis Association, Inc. (the original name of the TSC Alliance) along with Adrianne Cohen, Verna Morris and

FAQ

2010

Fiscal Year 2010 (July 1, 2009 – June 30, 2010) Welcome to BoardLink, which provides the most up-to-date information for the TSC Alliance Board of Directors, including meeting documents, committee meeting minutes

FAQ

2020

Fiscal Year 2020 (January 1 – December 31, 2020) Operating Board FY 2020 Board of Directors Contact List FY 2020 Board Committee Assignments FY 2020 Board Meeting Schedule Approved and

FAQ

2021

Fiscal Year 2021 (January 1 – December 31, 2021) Operating Board Board of Directors Contact List FY 2021 Board Committee Assignments FY 2021 Board Meeting Schedule Approved and Amended By-Laws,

FAQ

2022

Fiscal Year 2022 (January 1 – December 31, 2022) Operating Board Operating Board of Directors Contact List FY 2022 Board Committee Assignments FY 2022 Board Meeting Schedule Approved and Amended

FAQ

Board Manual FY 2024

If you would prefer a hard copy of any of these materials, please contact Rachel Wojnilower at (301) 562-9890 or rwojnilower@tscalliance.org. TSC Alliance Board Orientation, recorded January 17, 2024 Committee

FAQ

2023

Fiscal Year 2023 (January 1 – December 31, 2023), Fall Board of Directors Meeting, October 12-13, 2023 Table of Contents Overall Documents Strategic Planning Research Campaign Outreach Finance Global Relations Audit

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Fund research

Investment to Accelerate Research Although significant advances have been made in the diagnosis and treatment of TSC in just the last decade, the vast majority of children and adults with

FAQ

Ophthalmology

Aronow ME, Nakagawa JA, Gupta A, Traboulsi EI, Singh AD. Tuberous sclerosis complex: genotype/phenotype correlation of retinal findings. Ophthalmology. 2012;119(9):1917-1923. doi: 1016/j.ophtha.2012.03.020. This paper evaluates the genetic and clinical feature

FAQ

Dermatology

Boggarapu S, Roberds SL, Nakagawa JA, Beresford E. Characterization and management of facial angiofibroma related to tuberous sclerosis complex in the United States: retrospective analysis of the natural history database.

FAQ

CNS and TAND

Parthasarathy S, Mahalingam R, Melchiorre J, Harowitz J, and Devinsky O. Mortality in tuberous sclerosis complex.  Epilepsy & Behavior 2021 Aug 1, Volume 121, 108032. https://doi.org/10.1016/j.yebeh.2021.108032 The authors of this

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Research Strategy

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

FAQ

Diagnostic criteria

The clinical and genetic diagnostic criteria of 2021 are summarized below: MAJOR FEATURES MINOR FEATURES Hypomelanotic macules (≥3; at least 5mm diameter) “Confetti” skin lesions Angiofibroma (≥3) or fibrous cephalic

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Healthcare Providers

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

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Bcureful travel & lodging assistance

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

FAQ

Working with your healthcare team

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

FAQ

Medical access issues

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

FAQ

Choosing a healthcare provider

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

FAQ

Pharmacy coverage

Prescription drug plans are part of all commercial and government insurance plans in the United States; however, each plan is different per corporation / organization and state. When starting to

FAQ

Tips from adults

Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during

FAQ

Where do I go?

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

FAQ

What are my options?

Treatment options directly depend on the manifestation or the organ system that is causing an issue. Adulthood diagnosis of TSC typically presents much differently than childhood, therefore treatment management is

FAQ

Tips from parents

Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during

FAQ

Where do I go?

It is common for medical providers to be unfamiliar with TSC, including neurologists, and pediatricians. It is crucial to have a local neurologist and pediatrician involved in your child’s healthcare

FAQ

What are my options?

Treatment options directly depend on the manifestation, such as the type of seizure or the organ system that is causing an issue. If your child presented with seizures, the most

FAQ

Tips from parents

Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during

FAQ

In utero diagnosis

The most common manifestation in utero are irregular growths in heart tissue, known as cardiac rhabdomyoma. These are benign (non-cancerous) and usually get smaller on their own as the child ages.  Rhabdomyomas

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Working with Your Healthcare Team

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

Page

Medical Access Issues

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

Page

Choosing a Healthcare Provider

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

Page

Surveillance & treatment

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

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Prognosis

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

FAQ

Financial Conflict of Interest Policy

The Public Health Service (PHS) has adopted regulations (42 CFR Part 50 Subpart F and 45 CFR Part 94) to provide a reasonable expectation that the design, conduct, and reporting

TSC Matters Post

October Note from the CEO

      This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and

TSC Matters Post

December Note from the President & CEO

As I reflect on 2019 one theme that runs through most of what we accomplished is the incredible power of collaboration. I initially highlighted this idea in the very first

TSC Matters Post

June Note from the President & CEO

On May 15, the TSC Alliance joined TSC International (TSCi) to observe the seventh annual TSC Global Awareness Day, created to make sure that people worldwide were being diagnosed quickly

TSC Alert

Fibrous Cephalic Plaques—Beyond the Forehead

A new open access paper in the Journal of the American Academy of Dermatology investigates fibrous cephalic plaques (FCPs) in individuals with TSC. The authors found that though clinicians typically

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International

The TSC Alliance has a long-standing history of international involvement within the TSC community: supporting advocacy and research throughout the world with our Global Alliance Program and International Scientific Advisory