I am number 17 campaign
This week changemaker David Rose speaks with our CEO Lucy about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 […]
This week changemaker David Rose speaks with our CEO Lucy about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 […]
Written by Dr Lucy McKay, CEO of Medics4RareDiseases The new UK Rare Diseases Framework has identified four key priority areas for addressing the challenges faced by those living with a […]
Written by Chloe Bell, a fourth-year medical student at the University of Manchester Hi, my name is Chloe and I’m currently a fourth-year medical student at the University of Manchester. […]
Written by Dr Katherine Colvin, European Medical Journal (EMJ) Rare diseases are individually rare, but collectively common. Rare diseases, each occurring in fewer than 1 in 2,000 people (EU definition1), affect 3.5–5.9% […]
Dr Charles Steward is the Patient Advocacy & Patient Engagement Lead at Congenica a digital health company based on the Wellcome Genome Campus UK. He has spent 26 years working […]
Thanks to the wonders of modern technology and an amazingly powerful online platform #ECRD2020 took place virtually on 14th & 15th May. The conference was organised to take place in […]
The Challenge For months Fizzy Keeble and her partner, Mike, have been training in preparation for this Saturday. The challenge? SwimRun Australia – a unique and challenging adventure sport where […]
Student Voice Prize 2019 Last month the winning essays from the Student Voice Prize 2019 were published in celebration of Rare Disease Day 2020! You can read all of them […]
On this rare day take time to listen to a patient story and decide what you will do to make a difference to 300 million people living worldwide with a […]
Medical Students asked to “Think Rare” Rare diseases affect approximately 350 million people worldwide, yet they are some of the most difficult conditions to diagnose. Despite the number of people […]