STXBP1 Global Connect
STXBP1 Global Connect is an affiliation of groups from around the world all chartered with improving the lives of patients afflicted with STXBP1 disorders. Our communities of parents, scientists, and medical professionals are connected across the globe with the common purpose of ultimately finding a cure for this rare genetic disease. STXBP1 Global Connect is the central online location that lists all related STXBP1 organizations whether they are websites, social media groups, or simply an email list. There are new groups forming every month and we are glad to welcome everyone who will join us in whatever manner they are able.
Together we are stronger. Together we will find a cure.
The STXBP1 Foundation is an advocacy organization leading the charge for a cure for disorders caused by changes in the STXBP1 gene.
Israel
Rare Smile is an Israeli non-profit organization aimed to raise awareness and advance research for treatments for STXBP1 patients.
Australia
Spain
Asociación Síndrome STXBP1 España
Brazil
Clicando neste link você será direcionado para a página do grupo dos pais de pessoas com Stxbp1 do Brasil.
Norway
Country representative: Lone Jelva Hansen
Italy
L’associazione STXBP1 ITALIA mira a promuovere l’autonomia e a migliorare la qualità di vita delle persone affette dalla mutazione STXBP1
France
L’association STXBP1 France a pour but de créer une communauté de petits patients et d’accélérer la Recherche.
Poland
Facebook group for Poland
Germany
Die deutsche STXBP1 Informationsseite bietet außer Infos den Weg zur deutschen Whatsapp Elterngruppe und zum Verein STXBP1 e.V.
Denmark
Velkommen! Den danske STXBP1 patientgruppe er lille, men vi støtter hinanden, og holder skarpt øje med forskning ihele verden. Vertegenwoordiger: Katja Fehrmann Vermehren
China
European STXBP1 Consortium (ESCO)
ESCO is an investigator-driven consortium currently comprised of 9 European countries and Israel focused on promoting trial readiness for the treatment of STXBP1-related disorders. ESCO brings together relevant stakeholders in the space, including industry partners and family associations, to foster collaborations that accelerate the creation of life-changing solutions for this rare genetic disorder. Learn more at their website here.
