Latest News
Date: 17 Sep, 2019 European Reference Networks are a virtual network of specialists and healthcare providers across Europe who aim to share knowledge and information they hold about rare complex conditions. The hope is that this concentration of knowledge and information will improve the management and treatments for rare complex conditions. European Reference Networks (ERN) create a clear governance
As any Game of Thrones fan will know, Ireland is one of the backdrops for this TV fantasy drama which has gripped the world. One of our members, dreams was to visit the magical locations where the hit drama was filmed. Through the ASUK Big Activity Grant, ASUK were able to contribute to Amy’s trip
We are proud to announce that we are now a Charity Partner and an integral part of the Rare Revolution magazine, helping to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. We hope this will raise awareness of Alstrom Syndrome alongside other rare conditions and will
As the weather is hotting up, grab something chilled and take 5 minutes to read our latest newsletter. Filled with lots of stories from our members including travels to Barbados and America and how Birmingham Bobbies made dreams come true… Find out how you can get involved in planning your Family Event on the
Can you remember when we gathered together on our bikes to ride from Torquay to Birmingham, an amazing 200 miles to raise money and awareness of Alstrom Syndrome or when Nichola Martland along with her friends and family persuaded her friend to be waxed!! Eeekkk!! We rely on your continued generosity and support to continue