There are 3.5 million people in the UK living with a rare condition. Most will go on a long and frustrating journey marked with misdiagnosis and inadequate care before receiving the support required to manage their condition.
“Reforming Rare Diseases: Making the Rare Path the Right One” brings to life the current realities of care outlined in the findings of the Rare Experience 2020 survey. The current reality is set in comparison to a parallel, ideal journey that all those living with a rare condition deserve.
Watch as one person with a rare condition embarks on two different journeys to receive the treatment and care they need this Rare Disease Day 2022
We are proud to have collaborated on this video by Alexion Pharmaceuticals alongside our friends Genetic Alliance UK , Medics4RareDiseases and Rare Revolution Magazine!