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

Annual Family Conference

NTSAD’s Annual Family Conference

Every year, the Annual Family Conference is an unforgettable experience for rare families and the cornerstone of NTSAD’s compassionate and expert Family Support Services. The Conference provides affected adults and children, their families and caregivers including parents, partners, grandparents, and healthy siblings the rare opportunity to connect with people that truly understand; learn about latest research and symptom management approaches; and support one another.

July 7 - 10, 2022 marks the 44th Annual Family Conference and the first time in three years where we plan to gather again in person.

In 2021, the virtual conference was the largest ever with more than 400 registrants including nearly 150 families participating from across the U.S., Canada, and 10 other countries.

What to Expect

Whether virtual or in person, the Conference provides families with a safe space to support and learn from one another, to gain knowledge directly from researchers and industry working on potential therapies, and to contribute and share their experiences as our community navigates the launch of several clinical trials.The Conference focuses on sessions that are most valuable to families.

Session topics include:

  • Support groups for parents, caregivers, adults with Late Onset, and extended family
  • Symptom and health management
  • Research session with specific disease breakout groups
  • Bereavement support
  • Commemoration ceremony
  • Activities for affected children and their siblings

In addition, there are webinars and Zoom meetings held both before and after the conference.

The conference is very powerful--many families attend every year to reunite with friends and to support and mentor new families.

One mother, after attending her first conference, shared:

“You don't know true grace until you meet a mother holding her dying child in her arms reaching out to you, a total stranger, with love and compassion. I will never be the same.”

In addition to receiving incredible support and a sense of belonging to a community, many families form deep, decades-long friendships. Other families leave with a sense of hope, empowerment, and donations of equipment.

Helping Hand Program: Making the Conference Affordable

When the Annual Family Conference is held in person in cities such as Denver, New Orleans, and Orlando, some families need financial assistance to attend. Each year through the generosity of individuals, foundations, and companies more than $70,000 is raised to provide families with a Helping Hand Grant, which can range from covering the costs of one night at the conference hotel to covering hotel, registration, and travel expenses for the entire family. Each grant application is considered on an individual basis and priority is given to newly diagnosed families, families that have not attended before, and families that have lost their loved one in the past year.

Sponsorship Make a Difference

The NTSAD Annual Family Conference is made possible by the generosity of industry partners, foundations, families and individuals. Sponsorship goes toward creating a rich conference experience for families from around the world, and opportunities to connect with each and those working toward treatments. 

2022 Sponsors


The Doyle Foundation




Drs. Roselyn and Edwin Kolodny, Rare Humanitarian 

Sio Gene Therapies


Laura and Simeon Schindelman 


Aspa Therapeutics, a BridgeBio Company


Christine Chapman*  

Gerald Cox MD, PhD* 

EveryLife Foundation

The Hamilton Company Charitable Foundation

The Cameron & Hayden Lord Foundation*


In Memory of Dylan Manning and Stewart Altman

Passage Bio 

Joyce and Edward Ratner 

Mathew Forbes Romer Foundation*


Amicus Therapeutics

Blu Genes Foundation

JCR Pharmaceuticals 

Judy Kaplan


Recursion Pharmaceuticals


Bonnie and Barry Davis, In Memory of Adam Davis*

Emma's Fund for Families

Staci Kallish* and Chris Beer

Propel Careers* 


B Brave Foundation*

In Memory of Olly Belle Chapman

In Memory of Brooke Gettleman


Martha* and Ron Kleinman

*NTSAD Board Member