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TSC Matters

Recent Posts

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epilepsy. Toward this end, they are developing an inhaler rescue therapy that stops seizures in their tracks. If

Read More: Engage Therapeutics Clinical Trial

2019 International TSC Research Conference Review

The 2019 International TSC Research Conference: Changing the Course of TSC, co...

Read More: 2019 International TSC Research Conference Review

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

Read More: Upcoming Adult Topic Calls

Upcoming Community Events

Northern California Picnic Saturday, August 25, 2019, 11 AM – 2 PM Contact: L...

Read More: Upcoming Community Events

Become a Junior Leader!

We are looking for Junior Leaders for the 2019-2020 school year. The TSC Allianc...

Read More: Become a Junior Leader!

Join the TSC Alliance at Our 45th Anniversary Gala in New York City

Early bird tickets available until September 9, 2019. Learn More Get Your Ticke...

Read More: Join the TSC Alliance at Our 45th Anniversary Gala in New York City

Join Us at the Regional TSC & LAM Conference in Chicago!

The third Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is...

Read More: Join Us at the Regional TSC & LAM Conference in Chicago!

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Read More: TSC Clinic Experience of Care Survey

Listen to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

Read More: Listen to TSC Now

Join Team TSC and Run the NYC Marathon!

There are still a few spots left to run with Team TSC in the 2019 TCS New York C...

Read More: Join Team TSC and Run the NYC Marathon!

45th Anniversary Flashback: The 1990s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

Read More: 45th Anniversary Flashback: The 1990s

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by ...

Read More: Upcoming Step Forward to Cure TSC Walks

August Note from the President & CEO

From July 22-26 TSC Alliance staff members from across the country came together...

Read More: August Note from the President & CEO

August Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Read More: August Volunteer Opportunities Available

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)
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  • 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
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    • TAND Overview
    • Autism in TSC
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    • Eating and sleep difficulties in TSC
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    • 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
  • Participate in research
    ▼
    • TSC clinical trials
    • TSC Clinical Trial Finder
    • TSC Biosample Repository & Natural History Database
    • Anya’s Accelerator
    • Reproductive and Perinatal Health Initiative
    • Seizures and TSC: your data matters!
  • Get Involved
    ▼
    • Volunteer
    • Community Leadership Hub
    • Government advocacy
    • TSC Matters E-Newsletter
    • Become a member
    • Join Team TSC
    • Ways to give
  • News
  • Events
  • Donate
  • About Us
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    • Our Results
    • Corporate Policies
    • FAQs
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  • 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
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