Rare and Undiagnosed Network
We're a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: to bring genome sequencing into clinical practice to help undiagnosed patients better understand these conditions – and to join together as we improve the lives for all those affected. www.rareundiagnosed.org
Simons VIP Connect
An online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. We provide access to resources, information, and family support. Simons VIP also provides an opportunity for families to participate in research. https://www.simonsvipconnect.org/
The Epilepsy Association of Utah
Our parent organization, the Epilepsy Association of Utah 'provides awareness, education, support services, and advocacy on behalf of all those dealing with epilepsy and seizures' for the last 40+ years. www.epilepsyut.org
By partnering with other organizations and groups, we can better get the word out about KBG Syndrome, what to look for and what other conditions may apply. In turn, we can help these organizations get the recognition they deserve and build a stronger rare disease and health support network! Visit our partners and show them some love!
Research | Community | Cure