What are the opening hours?

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

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

Home
United States
Boston, MA
National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

01/13/2026

Being a rare caregiver, and practicing, , as we like to call it, is a heavy mental load to bear, but while we are rare, together we are mighty. We love hearing from families, and sharing together to help and one another through and .

Today we ask, what words, phrases, or mantras do you use to center your mindset and help you carry on when life feels overwhelming?

01/12/2026

The Child Neurology Foundation is offering their Willow & Wind: Healing Together course series. This grief support course is available for caregivers who have lost children in our communities and are navigating the life changes of grief. The course dates are Monday, February 2nd, 9th, 16th, and 23rd at 8:00 pm EST. Please see attached information.

Register here: https://www.surveymonkey.com/r/V75ZFKP

01/07/2026

The Helping Hand Grant application period for the 48th Annual Family Conference in Reston, Virginia is open until January 31, 2026.

NTSAD’s Helping Hand Grants give families and individuals the opportunity to apply for financial assistance to attend the Annual Family Conference. It is solely to aid parents of affected children and affected individuals who would not be able to attend the conference without financial help to cover the cost of registration (which includes meal costs) and hotel accommodations for up to three nights.

If you are an affected family or individual, or bereaved family we encourage you to apply for a Helping Hand Grant today at: https://docs.google.com/forms/d/e/1FAIpQLSfKBsvIXkk2N76yaJUif_xrrEaG1CJml7T8RvYfHYdRGa0ndw/viewform!

2026 grant award notifications will be sent beginning in February 2026.

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

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

12/26/2025

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

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.

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

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!

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!

12/16/2025

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

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

http://www.NTSAD.org/

Alerts

Be the first to know and let us send you an email when National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD):

Shortcuts

Address
Telephone
Opening Hours
Alerts
Contact The Practice
Claim ownership or report listing

Want your practice to be the top-listed Clinic in Boston?