Our CEO Dr Rick Thompson and Medics 4 Rare Diseases CEO Lucy McKay have delivered a thought-provoking article for PharmaTimes magazine on the UK Rare Diseases Framework and current rare disease landscape. Dive deep with two brilliant CEOs to explore the changes they want to see happen now!

The Prime Minister has named Dr Nick Sireau and Dr Anthony Hall, the founders of Findacure, Points of Light awardees for driving awareness, research and treatment into rare diseases! Daniel Zeichner MP for Cambridge presented the Points of Light Award to Dr Sireau and Dr Hall on Friday, 8 October, at the Findacure office on 66 Devonshire Road.

We are delighted to introduce you all to our new Patient Group Engagement Committee!  Our newly inducted committee members will 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. 

During our next RareChat on Tuesday 5th October at 1pm we will be discussing the role that patient groups can play in the design of research projects and clinical trials.

It's that time of year again! Mediaplanet and Health Awareness' Rare Diseases Campaign is back and our CEO, Dr. Rick Thompson, is featured amongst it for the third year in a row. Learn what Rick discussed in his article now!

The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and patient experience.

This webinar will explore the ways to measure quality of life in rare diseases for the purpose of health technology assessment, and the ways that patient organisations can get involved in the process.

Recruiting a Rare Board is a free programme designed by Findacure and Getting on Board – a charity specialising in trustee recruitment. It aims to help you recruit new board members in a professional manner, ideally leaving you with a group of interesting, skilled, and diverse people applying to help you deliver your patient group’s mission. Applications open now, but hurry - the deadline is 19th September!