National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

Our heartfelt thanks to the sponsors whose support made our 48th Annual Family Conference a success. Because of your gen...
05/14/2026

Our heartfelt thanks to the sponsors whose support made our 48th Annual Family Conference a success. Because of your generosity, our rare families and individuals coping with Tay-Sachs, Canavan, GM1, or Sandhoff had access to three days of vital information, compassionate support, and a community that understands their journey. We couldn't do this work without you!

Apply now for the RDLA Advocacy Mentorship Program, powered by the Everylife Foundation! The RDLA Advocacy Mentorship Pr...
05/12/2026

Apply now for the RDLA Advocacy Mentorship Program, powered by the Everylife Foundation!

The RDLA Advocacy Mentorship Program facilitates a “mentorship match” and initiates a year-long program. The mentor will provide 1:1 support for a minimum of one year and prepare individuals in various advocacy skill building such as pre and post event support for Rare Across America and Rare Disease Week, help develop their 30 second story, or other established as goals.
here: https://everylifefoundation.org/rare-advocates/mentorship-program/?utm_campaign=RDLA%20Webinars&utm_medium=email&_hsenc=p2ANqtz-8F6H2yb9B_HB61jYNzhMNGKzg8vW5k6jGMaOOq8ovu_3JY_rDUbZB33-u4uR1kMxYL__GmOZqO9h4mcE6Zcx-Xbj5LUQ&_hsmi=418238904&utm_content=418238904&utm_source=hs_email

Today we celebrate the incredible love of all mothers, especially those in the rare disease community. We recognize your...
05/10/2026

Today we celebrate the incredible love of all mothers, especially those in the rare disease community. We recognize your strength and resilience, and honor your boundless capacity to nurture, advocate, and move mountains for your child. Your endless love makes a beautiful impact in this world.

This May, we honor Mental Health Awareness Month and recognize the time, care, and emotional toll that comes with living...
05/06/2026

This May, we honor Mental Health Awareness Month and recognize the time, care, and emotional toll that comes with living with a rare diagnosis, supporting someone who has one, or navigating grief. As a gentle reminder, even when it feels impossible to find a moment’s reprieve, self-care is not selfish, it’s essential.

Sending big hugs to all this month.

NTSAD’s Industry Roundtable Hosts Special Guest Speaker:Amy Comstock-Rick, the Director of the FDA’s Rare Disease Innova...
05/05/2026

NTSAD’s Industry Roundtable Hosts Special Guest Speaker:

Amy Comstock-Rick, the Director of the FDA’s Rare Disease Innovation Hub, was the featured speaker at NTSAD’s recent Industry Roundtable Meeting on April 29.

More than 30 Industry Roundtable members and guests participated in this informative event, which preceded our Annual Family Conference.

05/04/2026

It’s hard to choose only a snippet to share of the conference when the whole weekend of community, connect, and support IS the highlight!

If you need us, we’ll be reminiscing about all the support, connections, information, and fun we shared during our wonde...
05/04/2026

If you need us, we’ll be reminiscing about all the support, connections, information, and fun we shared during our wonderful weekend together at the 48th Annual Family Conference!

05/03/2026

Every year at the end of the Annual Family Conference, attendees gather for the Camps Snuggle and Active parade that leads us into our celebration dinner!

Here, the children in attendance living with Tay-Sachs, Canavan, GM1, or Sandhoff are not just included - they’re the stars of the show!

Sending hugs to all the bereaved mothers in the world today. We see you, and your love speaks volumes.
05/03/2026

Sending hugs to all the bereaved mothers in the world today. We see you, and your love speaks volumes.

05/02/2026

How do NTSAD Annual Family Conference attendees feel about seeing their besties once a year at the conference? We think this video speaks for itself!

There's only one day left until the 48th Annual Family Conference, and we can't wait to see you in Reston, VA!The Annual...
04/29/2026

There's only one day left until the 48th Annual Family Conference, and we can't wait to see you in Reston, VA!

The Annual Family Conference, the cornerstone of our work, is an unforgettable experience for affected children and adults coping with Tay-Sachs, Canavan, GM1, or Sandhoff, and their rare families - including parents, partners, grandparents, healthy siblings, and caregivers. The Conference provides an opportunity to connect with people that truly understand. It is a place where attendees receive support from professionals and other families and learn about the latest research and symptom management approaches.

Address

2001 Beacon Street, Ste 204
Boston, MA
02135

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+16172774463

Website

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