It is an exciting time for Findacure as we induct our new patient engagement committee. The committee, many of whom have a deeply personal connection with the rare disease community and run patient groups themselves, will be our advisors when making decisions.

Their role will include helping us shape the topics of our empowerment workshops, giving feedback about the workshops and giving us ideas about increasing their accessibility, and working out our unmet challenges. Their expertise will be invaluable to us as a charity and we look forward to our future collaborations over their two year tenure, commencing with our first meeting this week.

Find out more about our new patient engagement committee on our ‘about us’ page and keep a look out for our upcoming blogs!

Findacure would like to sincerely thank our outgoing committee members David Bennett, Jonathon Morton, Claire Adams and Deborah Mann for their help and support over the past two years, as well as Alan Thomas who will remain on the committee.