ROSAH Syndrome Community Network
Welcome to RSCN, The ROSAH Syndrome Community Network. Developed and supported by the Oakes Foundation.
What is ROSAH Syndrome?
The name “ROSAH Syndrome’’ is derived from the complicated combination of symptoms that feature in this condition. It is predominantly an eye disease but has very distinct symptoms relating to Retinal Dystrophy, Optic Nerve Edema, Splenomegaly, Anhidrosis and Migraine Headache.
When was ROSAH Syndrome discovered?
It was discovered by Australian and US scientists in 2019 after a variant in the ALPK1 gene was identified as the cause.
About Us
The ROSAH Community Network was formed in 2021 by the Oakes Foundation.
Both the Network and the Foundation were inspired by the experience of The White Family who have four members of their family living with ROSAH Syndrome.
They have been working closely with a lead researcher in discovering the genetic cause, Professor Robyn Jamieson, from Children’s Medical Research Institute (CMRI) in Sydney, Australia, for many years. They started the network to support other families and promote more research into ROSAH with the aim of one day finding treatments or a cure.
Our sponsor, the Oakes Foundation aims to raise awareness and funds for research into ROSAH Syndrome.
Design
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