STXBP1 Global Connect
STXBP1 Global Connect is an consortium 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 website 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.
What Is STXBP1? ● Clinical Trials & Studies ● Clinics and Clinicians ● Census ● Researcher Resources
USA
The STXBP1 Foundation is an advocacy organization leading the charge for a cure for disorders caused by changes in the STXBP1 gene.
Australia
Denmark
Velkommen! Den danske STXBP1 patientgruppe er lille, men vi støtter hinanden, og holder skarpt øje med forskning ihele verden. Vertegenwoordiger: Katja Fehrmann Vermehren
Netherlands
Spain
Asociación Síndrome STXBP1 España
Brasil
Clicando neste link você será direcionado para a página do grupo dos pais de pessoas com Stxbp1 do Brasil.
France
L’association STXBP1 France a pour but de créer une communauté de petits patients et d’accélérer la Recherche.
Norway
Country representative: Lone Jelva Hansen
Israel
Rare Smile is an Israeli non-profit organization aimed to raise awareness and advance research for treatments for STXBP1 patients.
STXBP1 Québec
Pour vous aider et vous informer sur le syndrome STXBP1, en français et au Québec.
Germany
Die deutsche STXBP1 Informationsseite bietet außer Infos den Weg zur deutschen Whatsapp Elterngruppe und zum Verein STXBP1 e.V.
Poland
Facebook group for Poland
Italy
L’associazione STXBP1 ITALIA mira a promuovere l’autonomia e a migliorare la qualità di vita delle persone affette dalla mutazione STXBP1
China
Japan
日本でSTXBP1の活動を行っています。STXBP1関連疾患の方は、ぜひ日本の患者家族会にご参加ください。
ご不明な点はお気軽にお問い合わせください。
Slovakia
Buďme spolu pilierom pre tých, ktorí nás potrebujú...
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.
