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 48th Annual Family Conference
Thursday, April 30 to Sunday, May 3, 2026

Hyatt Regency
1800 Presidents St.
Reston, Virginia 20190

Conference Registration and Hotel Reservations

Applying for a Helping Hand Grant?

Please see the Helping Hand information and link to the application form below. If you are a family applying for a Helping Hand Grant, please wait to register until after your grant is approved. You will receive a separate link and code.

Family and Affected Individual Adult Registration
(13 years old and up) Reduced to $250.00
(Actual cost of attendance is $500)

Child Registration
(4-12 years old) $125.00
(Actual cost of attendance $250)

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

Academic Partner $350.00
(Actual cost of attendance is $500)

Industry Member $500.00

Hotel Reservations

Hotel rooms are now available to reserve for the 48th Annual Family Conference. All attendees must reserve their rooms using a personal credit card. The conference room rate ($225/night for one standard room) is available April 27 to May 6, 2026.

Attendees requiring an ADA accessible or roll-in shower room must reserve their room first and then let Becky know if they need an ADA room.

Reserve Your Hotel Room Here

Helping Hand Grants

What are 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 most of the cost of registration, meals and hotel room nights. If more assistance is needed, please reach out to Becky (becky@ntsad.org), NTSAD’s Family Support and Engagement Manager.

FAQs

Frequently Asked Questions

When is the application deadline?
The final deadline for all applications is January 31, 2026.

What if I miss the deadline?
There’s no guarantee funds will be available after the deadline.

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.

We live outside the US; are we eligible for a Helping Hand Grant? Yes! NTSAD can write a letter of support for your visa application, but NTSAD cannot cover travel expenses.

Do I need to pay for my affected child? No. We never charge for affected children.  You do not need to apply for a grant for an affected child. Additionally, a portion of all other family attendees’ fees are underwritten by NTSAD and reduced below the actual cost of attendance (which is more than $500 per person/adult and $200/child). Registration fees for family members are as follows:

Ages 0-3 Child FREE!
Ages 1-12 Child $125
Ages 13+ Adult $250

Are there limits to how much I can ask for? Yes. You may request a maximum of three nights of hotel accommodations (Thursday, Friday, Saturday), and two adults and two children registrations for immediate family members. Therefore, we ask you to only request funds that are absolutely necessary for attendance.

Is the cost of travel covered?
No.

How/when will I know if I was awarded a grant? You will be notified on a rolling basis beginning around February 1, 2026.

Why is there now a $25.00 registration fee for each adult attendee who receives a grant?
In order to guarantee the correct number of attendees, order the sufficient supplies, deliver accurate meal counts to the hotel, and support the staff time devoted to the Helping Hand process, a nonrefundable registration fee of $25.00 per adult is now required from all Helping Hand grant recipients who register for the Annual Family Conference.

What do I need to do if I am approved? You will receive an award letter via e-mail. Read this letter carefully.

Your acceptance of this letter serves as your contract of attendance with NTSAD. At that time, any additional fees owed for registration will be due to NTSAD. You must make your own hotel reservation for standard rooms only within the NTSAD room block using your own credit card (to leave on file with the hotel for incidentals). The hotel will then notify NTSAD of your reservation. You will not be charged for the approved hotel room nights, but you are responsible for any additional charges made to your room and nights that are not included in your Helping Hand Grant.

Apply for a Helping Hand Grant

Apply for a 2026 Helping Hand Grant Here

Look Back at the 2025 Research Day Summaries

At the 47th Annual Family Conference researchers and members of industry reported on their work and current clinical trials in breakout sessions for each disease.

Additional Conference Videos

“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

“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

Thank You to Our Sponsors

PRESENTING
Doyle Foundation

BELIEVE
Aspa Therapeutics

COURAGE
Anonymous
Chris Chapman and William Ohle
GNB Charitable Foundation
Hamilton Company Charitable Foundation
Laura and Simeon Schindelman

HOPE
Azafaros
IntraBio
Cynthia Lemere and Gerald Cox
New York Area Fund
Polaryx Therapeutics
Sanofi

INSPIRATION
BillionToOne
Blu Genes Foundation
Jaxson’s Train of Hope
JCR Pharmaceuticals and MEDIPAL
LabCorp
Lysosomal & Rare Disorders Research & Treatment Center
The Mathew Forbes Romer Foundation*

FAMILY & FRIENDS
Aaron’s Fund of NTSAD
B Brave Foundation*
Curant Health
Bonnie* and Barry Davis in Loving Memory of Adam
Michael and Brittany Fox-Muniz in Loving Memory of Jasmine
Staci Kallish, DO*
The Manning Family in Loving Memory of Dylan
Propel Careers*
Susan* and Alan Roden and Family
Ultragenyx

IN-KIND DONATIONS
Jersey Mike’s
Olive Garden

*NTSAD Board Member

2026 Conference Sponsorship Opportunities

Questions about sponsoring the conference or interested in hosting a focus group with families? Click the link below to view our available options or please contact the Development Office or by phone (617) 277-4463.

Annual Family Conference