FOXG1 UK registerd as a charity with the Charity Comission in July 2016. FOXG1 UK exists to promote relief, care and services to families and persons suffering from and affected by FOXG1 Syndrome, in particular by: raising funds in order to research treatments for the symptoms of FOXG1 Syndrome and research into the genetic causes of the disorder disseminating or publishing the useful results of such research for the benefit of the public. Supporting participation into clinical trials relevant to treating the symptoms of, or development of a cure for FOXG1 Syndrome, or participation in clinical trials for similar Rett-like disorders and Rett Syndrome. Raising public awareness of FOXG1 Syndrome and promoting a greater understanding of the condition within the general public and the medical and social professions.
Our Links Around the World
The number of cases of FOXG1 Syndrome being diagnosed are steadily growing. The FOXG1 Syndrome community has a strong Facebook Group originated by the International FOXG1 Foundation.
This group was estabilished by a small group of parents in the USA when the very first cases of FOXG1 Syndrome were diagnosed. The Foundation was created to promote research and to support the families who are living with the syndrome. They found friendship through the internet and have extended the hand of friendship across the globe.
As the "FOXG1 Family" has grown so has the number of local support groups as families deal with different issues within their own countries. There is now an International Point of Contact in many countries around the world.
We are members of the Rett Disorders Alliance UK. The Rett Disorders Alliance consists of Charities or patient groups which have direct or indirect involvement with issues relating to the management of symptoms, treatments or general condition of people with Rett Disorders in the UK. We are delighted that FOXG1 UK is part of this Alliance and look forward to working together with the other groups involved to collaborate on shaping a more positive future for people with Rett Disorders in the UK. You can read more about this work on the Reverse Rett website.
We are delighted to working with the FOXG1 Research Group. FOXG1 UK is a very small organisation so we are very fortunate to be able to work with the FOXG1 Research Group and to have access to their Scientific Advisory Board. They are working with the BLACKSWAN Foundation. The Foundation supports research on all different types of rare and orphan disease, which makes its vision unique and helps in finding new solutions that can assist a large variety of projects.