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

For 68 years NTSAD has existed to support families affected by rare disease and fund research for these diseases. In the...
10/24/2025

For 68 years NTSAD has existed to support families affected by rare disease and fund research for these diseases. In these near seven decades of operation, thousands of families and individuals have found a place of community and connection in the rare disease world, hope for the future of treatments and cures, and bereavement support at the end of their care journey. We are rare together, we are NTSAD.

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

What three words come to mind when you think of NTSAD?

NTSAD CEO, Kathy Flynn attended the NORD Breakthrough Summit in Washington, DC earlier this week and shared the importan...
10/23/2025

NTSAD CEO, Kathy Flynn attended the NORD Breakthrough Summit in Washington, DC earlier this week and shared the importance of hearing family stories. NORD works to shape the future of rare disease treatments, research and policy to advance innovation for the more than 30 million Americans – and more than 400 million people worldwide with rare diseases.

We welcome you to join us at Imagine & Believe on November 6th for an inspiring evening of community, connection, and pu...
10/22/2025

We welcome you to join us at Imagine & Believe on November 6th for an inspiring evening of community, connection, and purpose.

Reserve your tickets by October 30th to join us in person for our signature annual fundraising event, where we’ll honor the Lord family for their 25 years of advocacy and generosity.

Can't make it to the event in person? Support from afar by making a donation or bidding on an online auction item today at https://ntsad.org/events/imagine-believe/.

Whether near or far, your support helps us move closer to effective therapies and provides vital services to families facing rare genetic diseases.

At NTSAD, we’re here for you through every step of your rare disease journey. We know that one-sized support doesn't alw...
10/21/2025

At NTSAD, we’re here for you through every step of your rare disease journey. We know that one-sized support doesn't always fit all. Our Family Services team listens and provides 1:1 support, resources, curated materials, and helps makes connections to other families and affected individuals from diagnosis through bereavement.

💜 We are rare together, we are NTSAD. 💜

✨The 2025 NTSAD Imagine & Believe Online Auction is LIVE! ✨Bid big, impact lives. Every winning bid supports families an...
10/15/2025

✨The 2025 NTSAD Imagine & Believe Online Auction is LIVE! ✨

Bid big, impact lives.

Every winning bid supports families and accelerates the search for approved therapies and vital family service support. Don’t miss your chance to win unforgettable experiences while supporting a powerful cause. Start bidding now at https://events.readysetauction.com/ntsad/rgeventsimagine-beli.

Esteban first started attending the NTSAD Annual Family Conference fifteen years ago when his sister, Bela was diagnosed...
10/14/2025

Esteban first started attending the NTSAD Annual Family Conference fifteen years ago when his sister, Bela was diagnosed with juvenile Tay-Sachs disease. Today, Esteban shares how growing up with the support of NTSAD helped shape the man he is today, and demonstrates his heart for service for other siblings of those coping with a diagnosis of Tay-Sachs, Canavan, GM1, or Sandhoff, and those who have lost their sibling.

"To me, as the sibling to an affected child, NTSAD has served as an invaluable community that I can credit with being the largest reason I have been able to succeed as an adult.

As a sibling, the conference was the best holiday of the year. No where else did I ever feel accepted and understood by peers in my age group in the way that I did at the NTSAD conference. So much so, I met my lifelong friend at the conference who will inevitably be the best man in my wedding.

I feel convicted to redirect the gifts that have been given to me in the form of NTSAD. I want to guide other youth siblings like myself through the arduous situation presented to them to which very few others can relate. I want to help those whose shoes I have walked turn into the best possible version of themselves in spite of the hardships that reverberate through their hearts."

As our 2025 Day of Hope events continue we're proud to highlight the NTSAD friends, families, staff, researchers, clinic...
10/09/2025

As our 2025 Day of Hope events continue we're proud to highlight the NTSAD friends, families, staff, researchers, clinicians, supporters, and more in attendance of events for hope, and those who advocate to spread awareness of Tay-Sachs, Canavan, GM1, and Sandhoff while raising much needed funds for research and family services.

There's still time for you to join us in the Day of Hope effort as a RADvocate yourself. Simply visit NTSAD.org to make a donation of any size and support families like Jaxson's and Jessie's (pictured here).

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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