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 47th Annual Family Conference
Thursday, April 24 to Sunday, April 27, 2025

Dallas Addison Marriott Quorum
14901 Dallas Pkwy
Dallas, TX 75254

Conference Registration

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

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 (becky@ntsad.org), NTSAD’s Family Support and Engagement Manager.

Frequently Asked Questions

When is the application deadline?
The final deadline for all applications is January 15, 2025.

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 by January 31, 2025.

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 2025 Helping Hand Grant Here

2024 Research Day Summaries

At the 46th 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

2025 Conference Sponsorship Opportunities

Download the Conference Sponsorship form below to learn more and become a sponsor today!

Questions about sponsoring the Conference or interested in hosting a focus group with families? Please contact the Development Office here or by phone (617) 277-4463.

 

This conference is made possible thanks to our generous sponsors.

Presenting
Anonymous
GNB Charitable Foundation
Doyle Foundation

Believe
Aspa Therapeutics
Sanofi
Laura and Simeon Schindelman

Courage
Christine Chapman and
William Ohle

Hope
Azafaros
Dr. Gerry Cox and Cindy Lemere
Hamilton Company Charitable Foundation
IntraBio
Natera
NTSAD New York Area Fund

Inspiration
Blu Genes Foundation
Curant Health
Jaxson’s Train of Hope
JCR Pharmaceuticals
Lysosomal & Rare Disorders Research & Treatment Center (LRDRTC)
Mathew Forbes Romer Foundation
Myrtelle
Vayle’s Fund

Family
Aaron’s Fund of NTSAD
B Brave Foundation
Bonnie and Barry Davis
in loving memory of Adam*
Monica and Gary Gettleman
Staci Kallish*
The Manning Family
in memory of Dylan
Propel Careers (Lauren Celano*)
Susan* and Alan Roden and Family

*NTSAD Board Member

NTSAD’s Annual Family Conference Video

Why Attend NTSAD’s Annual Family Conference?