Who are Unique? In the world of rare genetic conditions, understanding the intricacies of a specific disorder and accessing comprehensive information can be a daunting task for families and healthcare […]
Ehlers Danlos Syndrome (EDS) refers to a group of conditions that affects connective tissues, which includes skin, bones, blood vessels and many other organs. Symptoms of Ehlers Danlos Syndrome can […]
Last Monday I attended a reception at the House of Commons to celebrate the 40th anniversary of the Society for Mucopolysaccharide Disease, or MPS. MPS is a member of the […]
It’s my first blog post for M4RD and I have been thinking back to when I was first introduced to the field of rare diseases, whilst in Med School. At […]
On Thursday 27 May 2021 Sondra Butterworth, CEO of RareQoL and founder of the #WhoseVoice campaign, and Lucy McKay from M4RD hosted an engagement session on the UK Rare Diseases […]
We believe that asking doctors to #DareToThinkRare is fundamental to improving the experience of all patients living with rare diseases. And to eliminating the diagnostic odyssey. Working together to share […]