Patient Resources and Funding

National Organization for rare Disorders (NORD)

Tuberous Sclerosis Complex Travel & Lodging Patient Assistance

About nord and History

The National Organization for rare Disorders (NORD) is an independent charity organization that focuses on the identification, treatment and cure, or rare diseases such as Tuberous Sclerosis Complex through emphasis on education, advocacy, research, and patient service programs. 

The founders of NORD were families that were struggling to obtain access to treatments and decided to advocate for their cause. This lead to the passage of the Orphan Drug Act in 1983. NORD receives funding from various sources, including corporate donations, foundation grants, and patient service programs.

The Program

NORD’s Tuberous Sclerosis Complex Travel & Lodging Patient Assistance Program focuses on providing financial assistance for travel & lodging related to participation in clinical trials or furtherance of treatment for patients diagnosed (on under consideration for diagnosis) for Tuberous Sclerosis Complex. This includes financial support and concierge travel arrangements.

For additional information or, if you are in need of such assistance, please contact NORD at: Phone: 203.616.4320, Fax: 203.349.3199, Email: TSCTravel@rarediseases.org

Visit their website to find out more about their Assistance Programs and the Application Process by clicking below!

Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance is dedicated to finding a cure for Tuberous Sclerosis and improving the lives of those affected. They were founded on the core belief in the importance of community in facing difficult challenges. In 1974, four mothers came together to form the Tuberous Sclerosis Alliance as a support mechanism in relation to fellowship, generating awareness, finding out more information, and creating a support network.

Learn more about Tuberous Sclerosis on the TS Alliance website by clicking on the link below!