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.

Save the date and join us for the 49th Annual Family Conference!
Thursday, April 8 to Sunday, April 11, 2027

Hilton Chicago/Oak Brook Hills Resort & Conference Center
3500 Midwest Road
Oak Brook, Illinois 60523

For more information, email Becky Benson, Director of Family Support, at becky@ntsad.org.

2026 Research Day Presentations

Research Updates

Click the image below to access the 2026 Annual Family Conference Research Updates booklet, which contains summaries from companies, institutions, and researchers that serve as updates on their work.

“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
“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

Thank You to Our
2026 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.

NTSAD’s Annual Family Conference Video

Why Attend NTSAD’s Annual Family Conference?