Welcome to the Rare/D website – brought to you by The Whitworth Group; Nichola Garde, Mariangels Ferrer, Rhona Macleod, Fiona Ulph, Ramona Moldovan, Jay Roche, and Nick Jordan.
Over the coming year we’ll be releasing our first series of Rare/D Podcasts and starting the conversations about what it means to be rare.
Hosted by Nichola and Mariangels, we’ve got a variety of guests from professors to schoolchildren and topics of conversation will range from thee 100,000 Genomes Project to how we help people tell stories about their lives in ways that make them feel stronger.
The whole team will be continuing the friendly conversations between episodes on our social media channels and invite you to take part.
How do you see rare?
A rare disease is one that affects less than 1 in 2,000 people. There are over 6,000 different types of rare disease and around 80% have a genetic origin.
Despite being described as rare, around 3 million people in the UK are affected by a rare disease, and 1 in 17 will have one at some point in their lives.
So actually, whilst one particular rare disease is individually rare, collectively they’re pretty common.