September  15 - 17,  2016

Rett UK, European Association of Rett Syndrome (RSE)

My involvement with Rett syndrome began when my younger daughter Clare was diagnosed with the disease over 30 years ago. I founded the charity Rett UK in 1985.

My work in the UK led me to meet parents and professionals around Europe. I am one of the Founder members of Rett Syndrome Europe and am currently on the Board of this organisation.

I have served as a Non-Executive Director on the Board of two NHS (National Health Service) Trusts; for Primary Care and Mental Health/Learning Disabilities. I currently work as a lay member for the Health and Care NHS Trust.

In 1997 I was awarded the MBE (Membership of the Order of the British Empire) for Services to Health

In May this year (2016) I was elected by EURORDIS (Rare Diseases Europe) members to be an ePAG (European Patient Advocacy group) representative to serve on the Board of the proposed ERN (European Reference Network) for the disease group “Rare Congenital Malformations and Intellectual Disability”

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