Easy Fundraising – whilst you shop!

Date: 09 Jan, 2018  No Comments  ASUK Author

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, Sainsbury’s and, a donation will be made to Alström Syndrome UK, and it won’t cost you a penny extra. It’s really simple to get

Wow! – Listen to Inspirational Kion on BBC Radio 2

Date: 14 Nov, 2017  No Comments  ASUK Author

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 iplayer to 2 hours 1 min you can hear from Kion speaking about having Alstrom Syndrome and the work of Alstrom Syndrome UK to promote

Breaking down Barriers website launched

Date: 17 Jul, 2017  No Comments  ASUK Author

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 about this project and the fantastic work being achieved.

Shades for Sight campaign

Date: 28 Jun, 2017  No Comments  ASUK Author

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 in their sunglasses. Sunglasses protect your eyes, so remember to wear them 😎   Team at ASUK, even our furry friends are getting in on the

Rare Disease UK, new project for young people

Date: 26 Jun, 2017  No Comments  ASUK Author

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 use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated

EURORDIS: access to medicines for all

Date: 15 May, 2017  No Comments  ASUK Author

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 needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionate