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.

From the stress of learning a new diagnosis to potentially processing the emotions of an offspring with this diagnosis to learning how to navigate the medical complexity of routine follow-up surveillance and management in the adult healthcare sector, all while maintaining other responsibilities, can be overwhelming.

In 2012, the TSC Alliance launched our Adult Initiative to prioritize the needs of adults with TSC, invest in research to understand how TSC changes in adulthood, and develop a support network and resources for both young adults and adults.  You can find many of these resources in the Navigating the transition years of TSC and Navigating the adult years of TSC guides.

Below you can learn more about other ways to get connected and find support. If you need additional support, please contact our Support Navigators at support@tscalliance.org.

2026 TSC World Conference Webinar Series

REGISTER HERE

Seizure Types in TSC 

Wednesday, June 3, 2026, at 12:00 pm ET 

The third pre-conference webinar, Seizure Types in TSC, will address seizure types across the lifespan, and feature moderator Shelly Meitzler and presenters Sam Amin, MBCHB, MRCPCH, MSc, PhD and E. Martina Bebin, MD, MPA. 

Genetics Made Simple 

Wednesday, June 17, 2026, at 8:00 pm ET 

The fourth pre-conference webinar, Genetics Made Simple, featuring moderator Danielle Nolan, MD and presenter Hope Northrup, MDbreaks down the basics of TSC genetics making it easier to understand how TSC happens, why it varies from person to person, and what this means for families and individuals. 

mTOR Inhibitors: Past, Present and Future 

Tuesday, June 30, 2026, at 8:00 pm ET 

The fifth and final pre-conference webinar, mTOR Inhibitors: Past, Present and Future, featuring moderator Elizabeth Skufca and presenters David Ritter, MD, PhD and Michael Wong, MD, PhD, will explore the evolution of mTOR inhibitors in treating TSC, from their discovery to current clinical use in managing SEGAs, kidney tumors, epilepsy, skin, and more. Learn about side effects, long-term outcomes, and what the future holds—including new research and emerging therapies.  

REGISTER HERE

Adult Support and Resource Leads

Adult Support and Resource Leads (formerly Adult Regional Coordinators) establish and cultivate new and existing relationships with adults with TSC in their community region to maximize their independence by offering assistance and resources.

To get connected with your Adult Support and Resource Lead, email support@tscalliance.org.

Community Resource Leads (formerly Dependent Adult Transition Resource Coordinators)

The Community Resource Leads work collaboratively with the Community Region Leads to support and connect dependent adults, transitioning young adults, and their caregivers to state resources.

To get connected with your DATRC, email support@tscalliance.org.

Future Leaders Program

Future Leaders are a group of individuals ages 17 through 27 including young adults with TSC, siblings of someone with TSC, or other relatives of someone with TSC who are dedicated to building community leadership skills through volunteerism. They host events, advocate on behalf of other young adults and siblings, and provide peer-to-peer support.

If you are between the ages of 17 and 27 and are a young adult with TSC, a sibling, or a TSC relative and are interested in finding a place where you can make new friends, learn valuable leadership skills, and make a difference, the Future Leaders Program is great opportunity to get involved and we are excited to meet you! Learn more about the program by reading the full program description.

Adult topic calls

Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. These calls are hosted on the third Wednesday of September, October, November, March, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call.

See below for the full schedule of Adult Topic Calls:

Wednesday, September 16, 2026

Join the TSC Alliance for an open forum Adult Topic Call. This call offers adults living with TSC a welcoming, supportive space to connect, share experiences, and engage in open discussion with peers.

Register here

Wednesday, October 21, 2026

Register here

Wednesday, November 18, 2026

Register here

TSC Alliance Adult Community Facebook Page

The TSC Alliance Adult Community Facebook Page was created as a place for adults with TSC to connect and get information about resources and upcoming TSC Alliance events for adults. Like and follow the page now to get connected!

Other helpful resources

Below find links to additional organizations and resources.

Transition resources

College resources

 Other organizations

  • The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. They provide advocacy, training, and support services for people with intellectual and developmental disabilities through local Arcs.
  • Bender Consulting Services is a consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities

Thank you to our TSC Navigator supporters:

Northstar Sponsors

  • Jazz Pharmaceuticals 
  • UCB, Inspired by patients. Driven by science.

Cardinal Sponsors

  • Neurelis