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

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What does it mean to be a Rare GENEius?

By supporting families through a peer network, funding research in hope of a treatment, educating communities through grassroots partnerships and advocating for families and individuals with disabilities, we can empower people living with rare genetic diseases such as Tay-Sachs, Sandhoff, GM-1 and Canavan.

We must work to share our strength to enhance everyone’s ability to cope, provide hope, and raise awareness in populations all over the world. Being a rare GENEius is about education, science, empowerment, sharing #rareGENEius strength and prevention.

How can you be a Rare GENEius?

Make a gift of hope. Ask your friends and family to make a donation.

Donate Today

Share your story and NTSAD updates on social media. Raise awareness about carrier screening and prevention.

Help NTSAD advocate for our rare disease community.




Awareness, prevention and fundraising can provide a brighter future for families and individuals affected by rare genetic diseases.

Join the cause by attending or organizing an event to help raise awareness and funds.

NTSAD relies on volunteers to help spread the word and raise awareness.

With the exception of our small staff, everyone involved with NTSAD, including its Board of Directors and Committee members, generously give their time, energy and talents to NTSAD for free so we can spend less on administrative costs and more on raising awareness and finding a cure.

Come join our growing team of passionate volunteers!

Ways You Can Help!

Join one of NTSAD's committees and have a voice in what the organization does next.

Annual Family Conference Committee

Support the Conference VP and Member Services Director while planning the Annual Family Conference.

Development Committee

Share your ideas on how NTSAD can succeed in raising funds for research, family support and the overall health of the organization.

Family Services Committee

Be there for families and individuals when they come to NTSAD for guidance and support.

Research Initiative Committee

Work with a stellar group of members and get involved with the exciting progress on the research front.

If you want to contribute in other ways and volunteer your time and expertise, contact the national office at (800) 906-8723.

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  1. Raise Awareness
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