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 10, 2022, the NTSAD Community gathered at the Royal Sonesta in Boston for the first in-person Imagine & Believe event in three years to commemorate NTSAD’s 65th Anniversary. At the event, which raises funds for programs and services, NTSAD honored research pioneer Guangping Gao, PhD, for revitalizing geneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More therapy and potential treatments for rare diseases, including his research toward treatments for Canavan Disease.

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

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.

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.