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

Here's to a bright New Year ahead. To the things that are yet to come, and to the memories that we hold. Wishing you all...
01/01/2026

Here's to a bright New Year ahead. To the things that are yet to come, and to the memories that we hold. Wishing you all a happy, healthy, and bountiful New Year!

#2026

Will you help us close out 2025 with HOPE for rare families? Help support the rare community of families and individuals...
12/31/2025

Will you help us close out 2025 with HOPE for rare families? Help support the rare community of families and individuals coping with Tay-Sachs, Canavan, GM1, Sandhoff, or the loss of a loved one, with a year end gift today. There's still time to make an impact.

Donate now at NTSAD.org

-Sachs

Sending you warmth and togetherness this season of Kwanzaa and all year long.
12/26/2025

Sending you warmth and togetherness this season of Kwanzaa and all year long.

Sending warm Christmas wishes to all who celebrate. Hoping this season is filled with good tidings and joy for you and y...
12/25/2025

Sending warm Christmas wishes to all who celebrate. Hoping this season is filled with good tidings and joy for you and your family alike.

Juvenile Onset GM1 and GM2 Patient-led Listening SessionOn August 28, 2025, members of the juvenile‑onset GM1 and GM2 (T...
12/19/2025

Juvenile Onset GM1 and GM2 Patient-led Listening Session

On August 28, 2025, members of the juvenile‑onset GM1 and GM2 (Tay‑Sachs and Sandhoff diseases) community shared their experiences living with these conditions during a closed, patient‑led Listening Session with the FDA. Five parents introduced their children, described their diagnoses, and spoke about the profound impact the diseases have had on their families. They offered candid perspectives on the idea of a placebo‑controlled trial and urged the FDA to consider alternative approaches for bringing therapies to rare disease communities. Throughout the session, they emphasized the urgency of time and the reality that these children cannot afford to wait.

Read the full summary, now available on the NTSAD website, here:https://ntsad.org/wp-content/uploads/2025/12/Juvenile_GM1-GM2_Listening_Session.pdf

We had a great time connecting with everyone during our Virtual Holiday Party last night! Thank you to all who attended,...
12/18/2025

We had a great time connecting with everyone during our Virtual Holiday Party last night! Thank you to all who attended, and to those who wrote in to share what they are grateful for this year. The world often feels heavy, and coping with a rare diagnosis can feel isolating, so it's nice to have something positive to focus on. We so loved reading all of the items you're grateful for - because this holiday season, and always, we're grateful for YOU, our rare community!

Tonight is our Rare Community Virtual Holiday Party! We can't wait to see you there, but even if you can't make it, you...
12/17/2025

Tonight is our Rare Community Virtual Holiday Party! We can't wait to see you there, but even if you can't make it, you can join in on the fun for everyone this holiday season with our signature mocktail, the Sparkling Rare Violet!

As Hanukkah continues, may your days be filled with light, peace, and meaningful moments with loved ones this season and...
12/16/2025

As Hanukkah continues, may your days be filled with light, peace, and meaningful moments with loved ones this season and always.

Will you stand with rare families this holiday season? Help support the rare community of families and individuals copin...
12/16/2025

Will you stand with rare families this holiday season? Help support the rare community of families and individuals coping with Tay-Sachs, Canavan, GM1, Sandhoff, or the loss of a loved one, with a year end gift today.

Donate now at NTSAD.org

-Sachs

Your support makes a difference! Don't miss the final chance to bid - a few fabulous items are still up for grabs! NTSAD...
12/12/2025

Your support makes a difference! Don't miss the final chance to bid - a few fabulous items are still up for grabs! NTSAD's online auction for Imagine & Believe closes tonight at 11:45 PM!

Your final bids make a lasting impact by supporting research, providing essential family services and resources, and fueling advocacy.

Place your bids now at: https://events.readysetauction.com/ntsad/rgeventsimagine-beli.

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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