Receiving a rare diagnosis can be incredibly confusing and scary. Findacure is often contacted by patients desperately searching for more information and a community group to support them. While we actively refer people to the patient groups we work with, we don’t...

The world of patient advocacy can be busy and confusing at times, and finding up-to-date information about all the different projects and events can be difficult. This is why today’s blog shares five UK/European newsletters all rare disease patient advocates should...

To mark World Duchenne Awareness Day, this week's blog has been written by Nick Taussig, a parent of two boys living with Duchenne Muscular Dystrophy. He shares the story of how he and his friends designed and built a home adapted to his sons' needs. It's a...

The hurdles rare disease patients have to overcome when accessing treatments can seem unending. In this week's blog, Wan-hin Rex from the University of Hong Kong explores the case of spinal muscular atrophy (SMA) and the first disease-modifying drug to treat it,...

How can more medical students and researchers become involved in rare conditions? What challenges will they need to overcome to be successful? In this week's blog, Hanusha Durganaudu from Monash University Malaysia explores these questions. His blog was originally...