On Wednesday 2 March I hosted the Rare Disease Day reception in Parliament. 1 in 17 people is affected by a rare disease in their life. Many still experience difficulties in diagnosis, accessing information about the condition, receiving appropriate coordinated care and accessing treatments. Often they are left to become the experts in their condition, doing their own research and informing medical professionals. We are making progress but there is still a long way to go. Those with a rare disease and their families should be given more control over the services they access, as they know best what they need and how services can be improved.