Big changes are coming on 1 February 2022! We’re rebranding! Find out from our CEO which name we’ve chosen for our charity and let us know what you think on Facebook, LinkedIn or Twitter. We hope you like it!
See what the first cohort of our new trustee recruitment programme have been up to!
Our Marketing and Engagement Manager, Blayne, wrote a piece on rare diseases for Pharmafile’s Autumn edition!
Her section of the magazine explores the ‘Diagnostic Odyssey’ and the psychological and logistical impact rare conditions have on patients and their families. Learn what her article discusses now!
Pick up a copy of The Times and Sunday Times to read the ‘Rare Diseases’ Special Report by Raconteur! Our CEO Dr Richard Thompson wrote a piece on pg. 12 about improving the care pathway for rare disease patients and families. He discusses care coordination, transition and more. Read the report now!
Tickets are now available for the International Rare Disease Showcase! Explore international collaborations that are driving rare disease forward. Come discover the impact and challenges of working in the rare space around the world. Whether you wish to attend a single session or three days of fun, claim your FREE ticket to The International Rare Disease Showcase today!