We are delighted to introduce you all to our new Patient Group Engagement Committee! 

Our newly inducted committee members – joining us for the 2021-2023 term – will assist our team in identifying new projects for the charity, developing our events and projects, and in evaluating our services. They’ll be bringing their insights, expertise and lived experiences to the board to help us ensure we meet the ever-growing needs of our patient group community. 

We are thrilled to have such an impressive group of rare disease advocates joining us and look forward to working with them in the years ahead!

We would also like to say a huge thank you to our outgoing committee members – Alan Thomas, Ola Fagbohun, Sally Hatton, Sandra Webb and Wendy Adams – for their commitment and support over the past two years, and especially for their input in helping us respond to the priorities necessitated by COVID-19. 

Say hello to our new team! 

Head to our About Us page to read their bios in full!