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Date: 14 Nov, 2017 Listen to inspirational Kion (pictured below) who featured on BBC Radio 2’s Chris Evans morning show, on Monday 13th November 2017. Follow the link below to the recording, if you move the
Breaking down Barriers, website has launched! Developing supportive and inclusive services for individuals and families affected by genetic conditions. Have a look at the new website to find out more
EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments
ASUK is very excited to launch our Alström Syndrome ‘Living with a Rare Disease’ animation to raise awareness and understanding about this rare disease. Let’s all raise awareness and share