Our Global Chapters
As part of our mission to ensure that treatment and an eventual cure reaches every person around the world living with AS, FAST is growing a network of country—and region-based chapters—all run by AS parents, and all organized to ensure effective therapeutics for AS are available around the world to all individuals living with Angelman syndrome, regardless of age, genotype, nationality or language.
This isn’t only about spreading hope for a better future; it’s directly tied, in practical ways, to making that future a reality. We represent a rare disease in a competitive space—one made up of thousands of researchers from all over the world, hundreds of pharmaceutical companies, clinicians, investors, educators, policymakers, and more. Our success in attracting and keeping attention on our cause comes in part from our ability to make those partners aware of the global footprint of AS, which is larger than many assume, and to showcase that there are significant subsets of our community that are deeply informed about the relevant science, sophisticated in their approach to it, and ready and willing to participate in clinical trials.
FAST Global’s emphasis is on collaboration and sharing across pharmaceuticals, research institutions, and other AS and non-AS organizations around the world. Our work includes lassoing AS patients into the GASR, so that research and pharmaceutical partners can identify areas of incidence for trial consideration; education; research grant funding; translation; natural history studies in the local language using culturally relevant endpoints, and local clinical trial readiness.
Our current chapters are:
Every chapter has knowledge, expertise or some gift they bring both to their own country or region as well as to the global cause. The Global Angelman Syndrome Registry is the best example of this—a gift that one local chapter, Australia, activated their own community around, and which then benefitted AS worldwide.
In addition to global chapters, we also have global ambassadors. These are representatives from a country that does not yet, or which may not ever, have a full chapter. Our FAST Global Ambassadors are from: Belgium, Denmark, Finland, Greece, Ireland, Israel, Japan, South Korea, Netherlands, Norway, Russia, Switzerland, and Turkey. To be put in touch with any of them, please write to us HERE.
When a country or region develops a group of families, even a small one (3-4 families), who are like-minded and motivated around the topic of research and trials, they can create a full FAST chapter.
If you’re interested in global ambassadors or chapters, contact us at firstname.lastname@example.org.