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.

Join us for the 46th Annual Family Conference on April 11 – 14, 2024 in Chicago, Illinois. More details to come!

Hotel Reservations

The 46th Annual Family Conference will be held at Hilton Chicago/Oak Brook Hills Resort & Conference Center. The NTSAD group rate and room reservation information will be posted here when it’s time to start reserving rooms!

Conference Registration

STOP! If you are a family who have or will apply for a Helping Hand Grant, please wait to register after your grant is approved. You will receive a separate code.

Family and Affected Individual Adult Registration (13 years old and up) $200.00

Child Registration (4-12 years old) $100.00

Free Child Registration (Affected Children and Children 0-3 years old) No Charge

Academic Partner $350.00

Industry Member $500.00

Helping Hand Grants

Helping Hand Grants are in place to help families and affected individuals with the expense of attending the Annual Family Conference. The grants cover the cost of registration, meals and hotel room nights. If more assistance is needed, please reach out to Becky (, NTSAD’s Family Services Manager.

Frequently Asked Questions

We have received a grant in the past, can we apply again? Yes, but award priority is given to families who received their diagnosis or have a loved one who had passed in the past year.

Our family needs a grant for all our expenses, is that possible? Unfortunately, in most cases NTSAD is not able to cover travel expenses. Additionally, you may apply for a grant to cover your full conference fees (registration and hotel), but please be aware you might not be awarded the full amount you apply for.

We live outside the US; are we eligible for a Helping Hand Grant? Yes! But again, we are not in a position to cover travel.

Do I need to pay for my affected child? No. We never charge for affected children.

Are there limits to how much I can ask for? Yes. While we ask all families to make every effort possible to seek out conference funding before applying for a Helping Hand Grant, we must also limit the amount we grant to each family to ensure we can help as many families as possible.

How/when will I know if I was awarded a grant? The Helping Hand Grant committee will notify you of your grant award status after the grant approval process is complete.

What do I need to do if I am approved? You will be sent an award letter and contract of attendance to accept, sign and return to NTSAD.


Helping Hand Grant Application coming soon. 

See what families say about the Conference experience.

“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
“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
“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

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.



  • Laura and Simeon Schindelman




Families and Partners

  • Lauren Celano*
  • Codexis
  • Bonnie* and Barry Davis in Memory of Adam
  • Monica and Gary Gettleman
  • Staci Kallish* and Chris Beer

*NTSAD Board Member

Additional Conference Videos

NTSAD’s Annual Family Conference Video

Why Attend NTSAD’s Annual Family Conference?