Our Partners
Learn more about the organisations that The Schinzel-Giedion Syndrome Foundation collaborates with.
In this photo: Ophelia
Our Partners
Learn more about the organisations that The Schinzel-Giedion Syndrome Foundation collaborates with.
COMBINEDBrain
COMBINEDBrain is a consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent.
The Schinzel-Giedion Syndrome Foundation is very pleased to be part of this consortium, representing patients with rare genetic neurodevelopmental disorders.
SETBP1 Society
SETBP1 Society represents individuals with SETBP1 Disorder, a neurodevelopmental disorder caused by loss of function mutations of the SETBP1 gene.
Schinzel-Giedion Syndrome is caused by mutations of the same SETBP1 gene, but the type of mutation is different as SGS causes gain of function mutations.
We are pleased to work closely with SETBP1 Society to represent all individuals born with SETBP1 mutations.
Rare Epilepsy Network
The Rare Epilepsy Network (REN) is a partnership between rare epilepsy organizations, the Epilepsy Foundation, Columbia University, and Research Triangle International to conduct research to improve outcomes of rare conditions associated with epilepsy and seizures.
The Schinzel-Giedion Syndrome Foundation is very pleased to work closely with REN.
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