Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases


Alone we are rare. Together we are strong.

National Organization of Rare Disorders

1 in 10 Americans are living with a rare disease. By combining our voice with other rare diseases real legislative change is possible! NTSAD works closely with the National Organization of Rare Disorders (NORD) to support legislative issues important to the NTSAD family.

EveryLife Foundation & Rare Disease Legislative Advocates (RDLA)

These groups have played such an important role in raising awareness about legislation that impacts the rare disease community. Currently, efforts have been focused on the 21st Century Cures Act and the #CuresNow movement. Read more about this critical piece of legislation here. The current Senate has just ONE more chance to pass this legislation through before the new members of Congress and Senate move into the House. After this current session, the bill will die and efforts will go back to square one. 

Twitter Handles for Current Senate - download here.

Rare Disease Day

Global Genes

Genetic Non-Discrimination Act

In recent years the NTSAD family has successfully advocated for the passage of the Genetic Non-Discrimination Act (GINA) which protects against discrimination based on genetic information. NTSAD also supported legislation that requires public access to research funded by federal funds. We can make a difference!

Act Today

A simple phone call or email to your representatives is very powerful. Visit NORD to learn about current initiatives and updates on issues such as the Rare Disease Congressional Caucus, off-label drug use, medical foods such as high caloric formulas and compassionate allowances for Social Security.  

The NORD Take Action Now section is filled with helpful tips for contacting your representatives. NTSAD is happy to provide free brochures and educational materials for congressional visits.

Global Genes has created resources, or toolkits, specifically for groups such as NTSAD to use. Download the "BRINGING RARE DISEASE TO CAPITOL HILL: ADVOCATING FOR YOUR CAUSE" here.


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