#RareDiseases


We’ve joined the Rare Revolution!

Date: 30 Jul, 2019  No Comments  ASUK USER

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


ASUK speaks up for Patients in Clinical Trial Design Study

Date: 08 Feb, 2019  No Comments  ASUK USER

#TimeforChange Kerry Leeson-Beevers, National Development Manager for ASUK, along with ten other patient representatives, who are all members of the Patient Think Tank (PTT) of a European research consortium for methodology of rare disease trials called ASTERIX, were interviewed to discuss their views on clinical trial design and the challenges faced for rare diseases. This