Behçet’s UK
Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years. The challenge for the rare disease community is immense and can be very lonely for individuals. I’ve lost track of the number of brilliant workshops, webinar,...
MdDs
Findacure, now Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome (having MdDS embodies being in a stormy sea, when you’re not) in the UK. I was in terrible shape, physically and mentally, when...Rare Disease Special Report, Raconteur
We’ve been published! Rare Disease Special Report – Rick Thompson, Raconteur. Improving the rare disease care pathway now will maximise its impact and benefit.
Every number has a face, Pharmafile
We’ve been published! Every number has a face – Blayne Baker, Pharmafile. The ‘Diagnostic Odyssey’ and the psychological and logistical impact rare conditions have on patients and their families
Rare Diseases Campaign, Mediaplanet and Health Awareness
We’ve been published! Mediaplanet UK and Health Awareness’s Rare Diseases Campaign – Rick Thompson. Patient groups are a vital support to rare disease patients.