Our Events

Attend the Annual Family Conference or Imagine & Believe, or Organize an Event to Help Raise Funds and Awareness.

Every year, NTSAD’s Annual Family Conference is an unforgettable experience for families and the cornerstone of our compassionate and expert family programming.

The Conference provides everyone the rare opportunity to connect with people who truly understand, learn about latest research and symptom management approaches, and support one another.

On Thursday, November 9, 2023, the NTSAD Community gathered at the Royal Sonesta in Boston to raises funds for programs and services. At the event, NTSAD will honor Jayne Gershkowitz, Chief Patient Advocate at Amicus Therapeutics, a trailblazer in patient advocacy and a remarkable individual who dedicated her career to championing children, adults, and families affected by rare diseases.

Mark your calendar to attend our next Imagine & Believe on November 9, 2023!

Day of Hope

Our families and rare allies host Day of Hope events in their communities from June through October to raise awareness and funds for research. Every September, the NTSAD Community connects in one unified Day of Hope.

Family Events

We fund research and support families thanks to the generosity and hard work of families and their communities who channel their energy into raising awareness and funds for NTSAD.


Our webinars brings experts to the rare community to discuss topics ranging from research advances to issues that impact the family. Attend an upcoming webinar or watch a previous one.

We Care for Rare

Facu y Giuli
Juvenile Tay-Sachs Disease

“Facu (12) y Giuli (16) ellos aman viajar y divertirse en familia”

Alejandra Saipert, Madre