SFARI to Fund 18 Patient Advocacy Group Conferences

Studies of rare neurodevelopmental disorders are the most successful when researchers and communities of affected individuals and their loved ones work together. To help facilitate these connections, SFARI will fund 18 meetings, with a focus on groups in the Simons Searchlight community, that bring together scientists and patient communities to share recent advancements and discuss future research directions.

These meetings include:

Yellow Brick Road Project
France/European HNRNPH2-RNDD Meeting
April 26–30, 2025
Vineuil-Saint-Firmin, France

Cure CLCN4 Ltd
2025 Cure CLCN4 Scientific Conference
May 19–20, 2025
London, UK

Coalition to Cure CHD2
CHD2 Family & Scientific Conference
June 13–15, 2025
Westminster, Colorado

MED13L Foundation and CTNNB1 Connect & Cure
2025 Research & Family Meetup
July 10–12, 2025
Waltham, Massachusetts

Koolen-de Vries Syndrome Foundation
Patient Advocacy Summit
July 16–July 18, 2025
Chicago, Illinois

DLG4 SHINE Foundation
2025 DLG4 SHINE Scientific & Family Conference
July 17–18, 2025
Rahway, New Jersey

CSNK2A1 Foundation
OCNDS Scientific and Family Conference
July 17–20, 2025
Denver, Colorado

HNRNP Family Foundation
2025 HNRNP Gene Family Meeting
July 27–30, 2025
Ponte Vedra, Florida

FamilieSCN2A Foundation
2025 International SCN2A Family & Professional Conference
July 31–August 2, 2025
Denver, Colorado

CureGRIN Foundation
GRICON25
July 10–13, 2025
Orlando, Florida

STXBP1 Foundation
2025 STXBP1 Summit+
July 18–20, 2025
Westminster, Colorado

DYRK1A Syndrome
Texas DYRK1A Syndrome Meetup Conference
July 18–20, 2025
Dallas, Texas

MED13L Syndrome Association Europe
European Family and Research Conference
October 17, 2025
Lyon, France

Instituto DEAF1 e Autismos Sindrômicos
November 12–15, 2025
Brasília, Brazil

YWHAG Research Foundation
December 5–9, 2025
Atlanta, Georgia

ATRX Research Alliance
Meeting in early 2026
Meeting details TBA

NRXN1 Network
Meeting in early 2026
Meeting details TBA

Monoamine Oxidase Deficiency Foundation
Meeting details TBA

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