Progress in understanding rare neurodevelopmental disorders depends on strong partnerships between researchers, affected individuals and their families. To foster these collaborations, SFARI will support 17 meetings organized by patient advocacy groups within the Simons Searchlight community as well as 16 travel awards to allow researchers to attend such conferences. At these meetings, scientists and patient advocates can exchange insights, highlight recent advances and identify key directions for future research.
“[Attending a PAG meeting] was an absolute privilege,” says a previous travel award recipient. “All of the parents and caregivers were open to share their stories, hardships and hopes for the future. As a scientist and physician, I could really connect to the families, and it has brought me a lot of courage and motivation to keep working for them.”
The latest round of supported PAG meetings include:
US MEF2C Foundation
MEF2C Family Research Conference
January 15–16, 2026
Boston
The Yellow Brick Road Project
HNRNPH2 Conference & Family Meeting
April 26–28, 2026
Brighton, United Kingdom
GRI-UK
GRI-UK Conference 2026
May 14–16, 2026
Edinburgh, United Kingdom
DYRK1A Syndrome
DYRK1A Syndrome Family Conference & Scientific Roundtable
June 19–21, 2026
St. Louis
HNRNP Family Foundation
2026 International HNRNP Gene Family & Research Summit
June 28–30, 2026
Sheffield, United Kingdom
GRIN2B Foundation
GRIN2B Family & Research Weekend
July 17–19, 2026
Bethesda, Maryland
Coffin-Siris Syndrome Foundation
Coffin-Siris Syndrome Foundation Annual Conference
July 23–26, 2026
Orlando, Florida
FamilieSCN2A Foundation
SCN2A Family & Professional Conference
July 29–31, 2026
Orlando, Florida
CHAMP1 Research Foundation
CHAMP1 Family & Science Conference
September 3–6, 2026
Philadelphia
Koolen-de Vries Syndrome Foundation
Koolen-de Vries Syndrome Foundation Scientific and Patient Advocacy Summit
October 1–2, 2026
Nijmegen, Netherlands
Reed’s Reach for 15q13.3 Foundation
October 3, 2026 (Tentative)
Registration and location details to come
CTNNB1 Connect and Cure
2026 CTNNB1 Conference
October 8–10, 2026
Waltham, Massachusetts
SETBP1 Society
2026 SETBP1 Family & Research Conference
November 6–8, 2026
Austin, Texas
KMT2C Foundation
November 19, 2026
Houston
Registration details to come
SLC6A1 Connect
International Scientific Symposium and Family Conference
December 3–4, 2026
Denver
Registration details to come
The DAND Alliance
February 2027
Registration and location details to come
MED13L Foundation
February 25, 2027
Boston
Registration details to come
