Kay Parkinson
Kay Parkinson developed a charity for a very rare condition to the point where the NHS commissioned their services. She is an inspirational figure-who has been instrumental in the development of patient led NHS funded multi-disciplinary clinics for Alström Syndrome.
Alström UK has led important initiatives in the field of rare disease in addition to being a partner in the Euro-WABB project, an EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.
She developed links thoughout Europe and now expanding to start up Alström Europe.