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RegistryNewsletter
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WE PARTNER WITH PEOPLE & ORGANIZATIONS WHO INSPIRE US

These are the organizations in the SynGAP and Rare Disease space that we respect & learn from.
(Click on a logo to visit their site)

SRF is partnering with Ciitizen to launch a SYNGAP1 Digital Natural History Study to accelerate SYNGAP research, prepare for clinical trials, and support families in their care journey.

Global Genes’ purpose is to connect, empower, and inspire the rare disease community. SRF is grateful for their leadership.

The Personalized Medicine Coalition (PMC), representing innovators, scientists, patients, providers and payers, promotes the understanding and adoption of personalized medicine concepts, services, and products to benefit patients and the health system. Believing that paradigm shifts, especially in medicine, do not happen just because the science and new technologies suggest they should, PMC supports investment in and adoption of personalized medicine through education, advocacy, and evidence development.

The Combined Brain mission is to identify and discuss biomarkers and outcome measures for rare brain disorders, with a specific focus on non-verbal neurodevelopmental disorders.

The mission of AGENDA is to improve outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with autism.

California Action Link for Rare Diseases Inc. (CAL RARE) is dedicated to improving the lives of rare disease patients in California. We are a coalition of rare disease stakeholders.

Syngap Global Network is a collaboration between organizations and parents representing the Syngap community in their country. SGN has come together to drive the global unification of Syngap related efforts and initiatives. SRF is proud to be a part of this network.

Overcome works for the SynGAPians and their families in Canada and France. The families in this group are relentless and we are learning from them.

Verena Schmeder is the driving force behind SYNGAP Elternhilfe, her commitment is undeniable.

Official as of August 1st, 2019, we are thrilled to say that Syngap1.ch is an official Swiss association.

Same name. We know. What can we say, they have great taste. The family who created this effort and serves the SynGAPian families down under has two affected children. They do remarkable work and seek their wise counsel often.