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Date: 09 Jan, 2018 Did you know that you can support Alström Syndrome UK by shopping online? Every time you shop online via easyfundraising at one of the 3,300 retailers including John Lewis, Aviva,
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
The 27th June 2017 marks National Sunglasses Day To highlight the importance of wearing sunglasses; RNIB asked everyone to support the campaign ‘Shades for Sight’ by posting a selfie of themselves
Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “This project will
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