Sarah Lippett spent eleven years suffering with symptoms from an unknown condition, until she was diagnosed with the rare disease, Moyamoya, at the age of 17. This November she is launching her beautiful graphic memoir, A Puff of Smoke, which tells her story using the power of the sequential narrative. It took eleven years, my […]
‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.
Project Y’s mission is to find answers for children with rare diseases, helping to find answers for thousands of families who desperately need them. Project Y supports advancing initiatives such as the Undiagnosed Diseases Program, a groundbreaking program bringing together specialist doctors, scientists and technology to solve the most challenging medical mysteries. 500,000 Australian children […]
Earlier this year M4RD helped Childhood Tumour Trust (CTT) search for a doctor to attend the International Neurofibromatosis Conference in San Francisco this September. The successful applicant would also join CTT’s medical board as a volunteer medical advisor and represent the charity for at least two years. The M4RD team were excited to help CTT plan and […]
The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes, hear young people speak about their experience of living with rare disease and visit informational stands.
CRDN are hosting a Rare Disease session as part of the new Cambridge Biotech Week Health Horizons Forum.Health Horizons is a high calibre, two-day conference focusing on the future of the healthcare industry. Created by the Global Innovation Forum.