Annual Family Conference

April 11-14, 2024 • Chicago, Illinois

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.

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 allowing 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 is provides an atmosphere of excitement and engagement with sounds, games, and a higher level of stimulation.

We need you!

Come spend a little time with our amazing kids and volunteers up in Camp Snuggle and Camp Active. You will find us playing, reading, painting and more in Camp Active.

In Camp Snuggle, spend some time snuggling our kiddos, relaxing and helping with keepsake artwork. We would love to have you at any time during the conference. Please take a look at the schedule of events before signing up, to be sure you make it to all your chosen sessions. Thank you and see you in Camp!

(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 get to attend their own camp where they will play together, and spend time creating crafts, playing games, and having fun with our trained staff of conference childcare providers, all in a secure environment right inside the hotel.

(Available Thursday, Friday, Saturday)

Healthy siblings — from 10 years 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 will enjoy two outings during the conference: one on Friday and one on Saturday. During the outings, the Youth Group will see the sights around the greater Chicago area accompanied by Youth Advisors and our very own Dad Chaperones.

(Available Thursday, Friday & Saturday)

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 attendees from morning to midnight.

Conference Schedule

We encourage families to arrive at the hotel by the evening of Wednesday, April 10th to be able to join the Meet and Greet Pizza Party in the Family Lounge that evening and to be ready for the conference opening session on Thursday, April 11th at 12:30pm.

View the current schedule below:

FREE Photography Session at the Annual Family Conference!

Photography sessions will be available to all affected families (caring for a loved one or bereaved) and all affected adults. If you’re a bereaved family you may wish to bring a picture of your loved one to use in your photos. Check back soon for the link to sign up for a photography time slot.

2024 Conference Sponsors



The Doyle Foundation



Aspa, a BridgeBio Company

Chris Chapman and William Ohle

Laura and Simeon Schindelman



Cameron and Hayden Lord Foundation*

Gerald Cox, MD, PhD*

Hamilton Company Charitable Foundation


Blu Genes Foundation

Mathew Forbes Romer Foundation*

Families and Partners

B Brave Foundation*

Lauren Celano*

Stanley Cohen

Bonnie* and Barry Davis, In Memory of Adam Davis

Monica and Gary Gettleman, In Memory of Brooke Chase Gettleman

Jaxson’s Train of Hope

Staci Kallish, DO*

Susan* and Alan Roden and Family

*NTSAD Board Member