Rare Diseases Campaign by Medics 4 Rare Diseases
Medics 4 Rare Diseases have partnered with MediaPlanet to bring together the Rare Diseases campaign. Read about the importance of research and drug development and the need for access, funding and support to bring together and benefit the Rare Disease Community.
Metabolic Support UK’s report is now available to view
What is good quality of life for people living with inherited metabolic disorders?
“Wasting Money Wasting Potential”
The research report by Pro Bono Economics, commissioned by the DCP, has the aim of understanding more about the cost to the public purse of Tribunals and the impact that the process has on children and families. The report finds that at least £60million is spent on Tribunals – the vast majority of which are won by parents – and that this money could be better spent supporting children.
A comedy short produced by the Newborn Screening Collaborative
As a member of the Newborn Screening Collaborative, we are thrilled to share the promotional poster for the upcoming comedy short, “A Rare Find”, a film which we hope will help kickstart a conversation surrounding newborn screening!
Win a portrait of your furry friend!
This Leukodystrophy Awareness Month, we are hosting a Pet Portrait Raffle to raise vital funds and help us continue to support those affected by leukodystrophies.
The prizes available are:
Join a free webinar by Contact
Contact are campaigning to stop disabled children from missing out on free school meals.