TSC Alliance

TSC Alliance The TSC Alliance® is a source of hope and support for people with tuberous sclerosis complex. TSC is a complicated disease. Too often, TSC goes undiagnosed.
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Tuberous sclerosis complex (TSC) is a rare genetic disease that affects people at all stages of life. Every individual’s experience with TSC is different—many live independently while others require complex care. The TSC Alliance is working toward a future where every person and family affected by TSC has what they need to live their fullest lives. TSC causes tumors to grow in different organs and

can impair their function, primarily the brain, heart, kidneys, skin, and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. Some people live with few symptoms while others need continual support. Most people with TSC live normal lifespans. But we know at least two babies born each day in the United States will have it. Nearly one million people worldwide are estimated to be living with TSC, with approximately 50,000 in the United States. The TSC Alliance connects them. TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder. When TSC presents itself in the brain, it can seriously affect quality of life. TSC-associated neurological disorders (TAND) include a wide range of cognitive, behavioral and psychiatric challenges linked to the disease’s impact on brain function. Autism spectrum disorder (ASD), intellectual disabilities, neuropsychological deficits, aggressive behaviors and more can impact people with TSC and their families. The more we understand about TSC, the more we understand about other diseases. TSC is a linchpin disease, meaning its genetic pathway also plays a role in other diseases and disorders. Advancements in TSC research have enhanced treatments for autism, epilepsy, and cancer—diseases that affect nearly 27 million people in the US alone. For example, autism in TSC mimics autism generally in terms of how it affects the brain. This means research around TSC and autism will lead to breakthroughs for autism more broadly as well. Everyone should know about TSC, especially healthcare professionals. Too many people go undiagnosed or misdiagnosed for years because of a lack of awareness, even though TSC is as prevalent as ALS, cystic fibrosis and Huntington’s disease. Early diagnoses change lives because they enable early interventions, which may prevent symptoms like developmental delays. More research improves more lives. In the last decade, the TSC Alliance has helped coordinate and fund research that resulted in two new FDA-approved drugs for TSC manifestations: to shrink tumors in the brain and kidneys and to treat seizures associated with TSC. Working together to create progress like this will lead to even more breakthroughs and enable more people with TSC to thrive on their own terms.

05/31/2026
Currently, a lot of outcomes are being measured that are not always relevant or impactful to families and individuals wi...
05/30/2026

Currently, a lot of outcomes are being measured that are not always relevant or impactful to families and individuals with TSC. Help us create a core outcome set for TSC!

The TSC Alliance and Amsterdam UMC are developing a Core Outcome Set (COS) for TSC. Outcomes include symptoms, and how one feels and functions (e.g., sleepiness, cognitive function, behavior). A COS is a minimum set of outcomes that should always be measured at a doctor’s visit or in research. To decide which outcomes are important, we need to gather opinions and experiences from the TSC community.

If you are an individual with TSC or a parent/caregiver of an individual with TSC, please complete this survey. The survey takes 20-30 minutes to complete.

Complete the survey and learn more: https://hubs.li/Q04gH-Kz0

⭐Day 30 of TSC Awareness Month! ⭐Children identified with TSC as babies should be closely monitored for the need of earl...
05/30/2026

⭐Day 30 of TSC Awareness Month! ⭐

Children identified with TSC as babies should be closely monitored for the need of early interventional services.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.li/Q04hT0FV0.

🇺🇸🏃‍♀️ Run with purpose 🇺🇸🏃‍♂️Team TSC is gearing up for the 2026 Marine Corps Marathon on October 25—and we still have...
05/29/2026

🇺🇸🏃‍♀️ Run with purpose 🇺🇸🏃‍♂️

Team TSC is gearing up for the 2026 Marine Corps Marathon on October 25—and we still have bibs waiting to be claimed! 🎉

Known as “The People’s Marathon,” this iconic race celebrates determination over medals—making it the perfect opportunity to run for something bigger than yourself.

✨ Join Team TSC and run with meaning:
❤️ Honor those who have served by running with purpose
💙 Support individuals and families impacted by TSC
👟 Be part of a powerful, inspiring community

Whether you’re a seasoned marathoner or chasing your first finish line, this is your chance to make every mile matter.

🚨 Don’t miss out—our bibs are limited and going fast!

👉 Claim yours today and commit to something bigger this fall.
Let’s honor, remember, and move forward—together. 💙

Apply here: https://hubs.li/Q04jpJqy0

Join us for Seizure Types in TSCJoin us for the second webinar in the 2026 TSC World Conference Series, Seizure Types in...
05/29/2026

Join us for Seizure Types in TSC

Join us for the second webinar in the 2026 TSC World Conference Series, Seizure Types in TSC, on Wednesday, June 3, 2026, at 12 pm ET. This webinar, moderated by Shelly Meitzler and presented by Sam Amin, MBCHB, MRCPCH, MSc, PhD and E. Martina Bebin, MD, MPA will address seizure types across the lifespan.

Participation is not limited to conference attendees. You are welcome to join the webinar even if you do not plan to attend the 2026 TSC World Conference. We encourage you to join any sessions that may be helpful for yourself or those you support.

Register here:https://hubs.ly/Q04jlHHD0

⭐Day 29 of TSC Awareness Month! ⭐Infrequently, TSC can also lead to the formation of fibroids or tumors in the pancreas,...
05/29/2026

⭐Day 29 of TSC Awareness Month! ⭐

Infrequently, TSC can also lead to the formation of fibroids or tumors in the pancreas, bone and liver.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.ly/Q04hWsPJ0.

05/28/2026

Kristen Moore says advances in TSC research have changed the trajectory of her son Jackson’s life.

Watch Kristen tell how her fear has now turned to hope: https://hubs.li/Q04jgpM-0

⭐Day 28 of TSC Awareness Month! ⭐80% of those diagnosed with TSC will experience kidney problems due to TSC.This month, ...
05/28/2026

⭐Day 28 of TSC Awareness Month! ⭐

80% of those diagnosed with TSC will experience kidney problems due to TSC.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.ly/Q04hWqxm0.

⭐Day 27 of TSC Awareness Month! ⭐98% of those diagnosed with TSC will experience one or more skin manifestations.This mo...
05/27/2026

⭐Day 27 of TSC Awareness Month! ⭐

98% of those diagnosed with TSC will experience one or more skin manifestations.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.li/Q04hWfb60.

⭐Day 26 of TSC Awareness Month! ⭐Dental pits occur in about 90% of people with TSC.This month, we’re coming together wit...
05/26/2026

⭐Day 26 of TSC Awareness Month! ⭐

Dental pits occur in about 90% of people with TSC.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.ly/Q04hWj0B0.

Address

8737 Colesville Road, Suite 400
Silver Spring, MD
20910

Opening Hours

Monday 8:30am - 5pm
Tuesday 8:30am - 5pm
Wednesday 8:30am - 5pm
Thursday 8:30am - 5pm
Friday 8:30am - 5pm

Telephone

+18002256872

Website

https://linktr.ee/tscalliance

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