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

NTSAD is proud to be included in the Coalition of Patient Advocacy Groups (CPAG) in support of Leukodystrophy Awareness ...
09/05/2025

NTSAD is proud to be included in the Coalition of Patient Advocacy Groups (CPAG) in support of Leukodystrophy Awareness Month, and in service of families coping with Canavan and additional leukodystrophies.

For nearly 70 years, NTSAD has been a guiding light for families facing Tay-Sachs, Canavan, GM1, Sandhoff, and related r...
09/04/2025

For nearly 70 years, NTSAD has been a guiding light for families facing Tay-Sachs, Canavan, GM1, Sandhoff, and related rare genetic diseases.

From patient advocacy and emotional support to driving groundbreaking research and building a strong, connected community—NTSAD remains at the forefront.

Join us in honoring the legacy, progress, and the families at the heart of it all.

Learn more and get involved: NTSAD.org

Exciting News for the GM2 Community: GM2 Gangliosidosis Added to JCR/MEDIPAL Pipeline JCR Pharmaceuticals and MEDIPAL HO...
09/03/2025

Exciting News for the GM2 Community: GM2 Gangliosidosis Added to JCR/MEDIPAL Pipeline

JCR Pharmaceuticals and MEDIPAL HOLDINGS entered a co-development and commercialization partnership for JR-479, an investigational therapy for GM2 gangliosidosis. This is an important step towards initiating clinical trials, and, if successful, could lead to an approved therapy.

NTSAD is deeply grateful to JCR and MEDIPAL for bringing tangible hope to the Tay-Sachs and Sandhoff community.

Read the announcement here:
https://bwnews.pr/4lXTqqL

Join us for NTSAD’s signature fundraising event, Imagine & Believe, where we envision a world with effective treatments ...
09/03/2025

Join us for NTSAD’s signature fundraising event, Imagine & Believe, where we envision a world with effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

This year at Imagine & Believe, we are proud to honor the Lord family for their extraordinary 25-year commitment to advancing NTSAD’s mission. Their tireless advocacy and enduring generosity have made a lasting impact on generations of families affected by rare genetic diseases.

Be part of this unforgettable evening and support the mission that drives us forward. Get your ticket or support the event as a sponsor today!

Be Rare Aware this September for Tay-Sachs, Sandhoff, and Leukodystrophy Awareness Month! Share the following infographi...
09/02/2025

Be Rare Aware this September for Tay-Sachs, Sandhoff, and Leukodystrophy Awareness Month!

Share the following infographics (by saving these photos or downloading the pdf versions at NTSAD.org) on your own social platforms, and with family and friends to quickly and easily give a snapshot of TaySachs, Sandhoff, and Canavan. You can utilize these one-pagers for your events and awareness campaigns, and to tie in to our upcoming Day of Hope!

Community

Knowledge is power! September is also Newborn Screening Awareness Month. NTSAD supports newborn screening efforts by pro...
09/01/2025

Knowledge is power!

September is also Newborn Screening Awareness Month. NTSAD supports newborn screening efforts by providing funds; educating families, clinicians, and researchers; building and sharing resources; and connecting stakeholders.

We established a Newborn Screening Consortium (NBS), which includes expert clinicians and researchers as well as industry representatives. In 2021, NTSAD and industry members of the NBS supported the development of critical assays for newborn screening so that when treatments are approved, they may be included on the Recommended Uniformed Screening Panel (RUSP).

September is Awareness Month for Tay-Sachs, Sandhoff, and Leukodystrophies Now, and always, we stand with families and i...
09/01/2025

September is Awareness Month for Tay-Sachs, Sandhoff, and Leukodystrophies

Now, and always, we stand with families and individuals impacted by these rare, inherited neurological diseases. Awareness leads to earlier diagnoses, better support, and hope for future treatments.

Join us in raising awareness and honoring the strength of the NTSAD community.
Learn more, share, and support at NTSAD.org

Today, on National Grief Awareness Day, we pause to acknowledge the profound grief that families of those affected by ra...
08/30/2025

Today, on National Grief Awareness Day, we pause to acknowledge the profound grief that families of those affected by rare diseases endure.

For families facing diseases like Tay-Sachs, Canavan, GM1, or Sandhoff, the grief is often complex. It’s not just the loss of a loved one—it’s the grief that comes with navigating a rare diagnosis, feeling isolated, and the uncertainty of what the future holds.

To those living with a rare disease, to the caregivers, and to the families: Your grief is seen, your strength is recognized, and your journey matters.

On this day, we honor your resilience and hold space for your sorrow. Together, we raise awareness, offer support, and amplify the voices of those who understand the unique grief that comes with rare diseases and loss.

Your Voice Matters! Your Story Inspires!Are you a parent, caregiver, or loved one impacted by a rare genetic condition l...
08/27/2025

Your Voice Matters! Your Story Inspires!

Are you a parent, caregiver, or loved one impacted by a rare genetic condition like Tay-Sachs, Canavan, GM1, or Sandhoff disease? You’re not alone — and your voice is powerful.

Join us as a RADvocate to raise awareness, share your journey, and help drive change for the rare disease community. Whether you're sharing your story, supporting others, or advocating for research and policy — your impact is real. Reach out to learn more today!

We are rare together - we are NTSAD!

🎉 Big news: NTSAD is now on TikTok! Follow us at ntsad1957 (or scan the QR code in the photo) for family stories, update...
08/26/2025

🎉 Big news: NTSAD is now on TikTok! Follow us at ntsad1957 (or scan the QR code in the photo) for family stories, updates, information, events, behind-the-scenes moments, and more! Be part of the greater rare disease community on social media and help spread awareness of those affected by Tay-Sachs, Canavan, GM1, and Sandhoff diseases. We are rare together - we are NTSAD!

The Greenwood family, pictured front and center, is seen at their recent Day of Hope fundraiser for NTSAD at McGonagle’s...
08/21/2025

The Greenwood family, pictured front and center, is seen at their recent Day of Hope fundraiser for NTSAD at McGonagle’s Restaurant in Massachusetts. The Greenwoods did a fantastic job of bringing together their friends, neighbors, and colleagues to raise funds and awareness of Canavan disease.

Three Board members, Lauren Celano, Colleen Pierce, and Stefanie Solomon, and three staff members, Erin Demers, Valerie Greger, and Kathy Flynn, as well as past NTSAD staff member, Sydnie Dimond, attended to support the event.

Kids with rare diseases deserve a fighting chance!The House has re-introduced the Give Kids a Chance Act, which includes...
08/19/2025

Kids with rare diseases deserve a fighting chance!

The House has re-introduced the Give Kids a Chance Act, which includes provisions to reauthorize the PRV Program as previously proposed in the Creating Hope Reauthorization Act of 2024. Help us pass the Give Kids a Chance Act of 2025 and protect the Rare Pediatric Disease PRV Program! Urge Your Member of Congress to Support the Reauthorization of the Rare Pediatric Disease PRV Program with just a few clicks at the link below.

Take action now at: https://everylifefoundation.quorum.us/campaign/110385/

✅ Tag your reps. ✅ Tag your friends. ✅ Let’s be heard.

Address

2001 Beacon St, 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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