Annual Family Conference

Connect, Learn, and Support.

The Annual Family Conference, the cornerstone of our work, is an unforgettable experience for affected children and adults and their rare families including parents, partners, grandparents, healthy siblings, and caregivers. The Conference provides you the rare opportunity to connect with people that truly understand. It is a place where you receive support from professionals and other families and learn about the latest research and symptom management approaches.

Below is the schedule for the 45th Annual Family Conference held in Reston, Virginia from Thursday, June 1 through Sunday, June 4, 2023.

Open throughout the conference:

(Available Thursday, Friday, Saturday during the day; closed during meals)

These camps are staffed with a highly skilled team of trained nurses and dedicated volunteers, many of whom are parents of affected children, who can care for the affected children during conference session times This allows parents to attend sessions worry-free, if they so choose.

Camp Snuggle is a serene place designed to quietly support the needs of affected infantile children who benefit from less sound and movement.

Camp Active may appeal more to our juvenile and Canavan families in that it provides an atmosphere of excitement and engagement with sounds, games, and a higher level of stimulation.

(Available Thursday, Friday, Saturday during the day; closed during meals)

The dynamic Camp Sunshine program is a conference favorite among our healthy siblings, ages 0-9. While mom and dad attend sessions, siblings have an opportunity to attend their own camp where they enjoy playing together and spending time creating crafts, playing games, and having fun with our trained staff of conference childcare providers in a secure environment inside the hotel.

(Available Thursday, Friday, Saturday)

Healthy siblings — from 10 years old to high school seniors — come together with peers who understand what it’s like to have a sibling with a rare disease. Thursday is a day-long program, which includes a Youth Peer Group (YPG) session (just like the PPG sessions the parents attend), and other support-based activities. The Youth Group enjoy two outings during the conference: one on Friday and one on Saturday. During the outings, the Youth Group often visit local sightseeing attractions. They are accompanied by Youth Advisors and our very own Dad Chaperones.

The NTSAD Family Lounge is a place to rest, relax, and get to know one another. We understand attending sessions can be overwhelming and emotional. We encourage you to check into the Family Lounge often to grab a snack or drink and chat with your fellow attendees between sessions and in the evening. The Family Lounge is open to all conference attendees from morning to midnight.

2023 Conference Schedule (sessions and times subject to change)

Check out our 2023 Conference sessions here…

“For our family attending the conference is like coming ‘home’ to a family that understand and where you don’t have to explain yourself…you just get unconditional love and acceptance.”
Mary Jones, Mother of Tay-Sachs Child
“Attending conference changed everything for me. It’s an incredible feeling to bond with other families who understand what you are going through and are willing to hold your hand through it all….. it’s hard to sum it up. The conference truly changed my life!”
Bradley Martins, Sandhoff Family
“The support and guidance we received in the meetings was invaluable in helping us to stay on our feet, band together as a family and to continue to support her brother. There was so much comfort in knowing we were with other parents who completely understand the way we are feeling.”
Anonymous, Support Family

2023 Annual Conference Sponsorship Opportunities

You can support families by sponsoring the Annual Family Conference.

For questions about sponsoring the Conference, please contact Susan, Director of Development and Communications, via email ( or by phone (617) 277-4463.

2024 Sponsors



The Doyle Foundation



Aspa, a BridgeBio Company

Chris Chapman and William Ohle

Jessie’s Rally of Hope

Laura and Simeon Schindelman


Aaron’s Fund


Cameron and Hayden Lord Foundation*

Gerald Cox, MD, PhD*

Hamilton Company Charitable Foundation

The Manning Family, In Memory of Dylan Manning

NTSAD New York Area Fund


Amicus Therapeutics

Blu Genes Foundation

Emma’s Fund for Families

JCR Pharmaceuticals

Mathew Forbes Romer Foundation*

Families and Partners

B Brave Foundation*

Lauren Celano*

Stanley Cohen

Bonnie* and Barry Davis, In Loving Memory of Adam Davis

Monica and Gary Gettleman, In Memory of Brooke Chase Gettleman

Jaxson’s Train of Hope

Staci Kallish, DO*

NTSAD of Delaware Valley

Susan* and Alan Roden and Family

*NTSAD Board Member

Conference Videos

NTSAD’s Annual Family Conference Video

Why Attend NTSAD’s Annual Family Conference?