Become a Findacure advisor – join our Patient Engagement Committee!

by | Jan 31, 2019

We are delighted to announce applications for our Patient Engagement Committee are now open!

We are passionate about incorporating the patient voice into our work, which is why, in 2017, we established the Empowerment Advisory Committee – made up of five passionate and motivated members of the Findacure community, who would provide their unique insight, perspective and guidance on our endeavours to transform the lives of rare disease patients. With their support, we have developed our workshop programme, restructured the e-learning portal, and begun the overall integration of our patient group training projects.

Now, we are seeking the next round of applicants for our newly re-named Patient Engagement Committee.

What is the Patient Engagement Committee?


The Patient Engagement Committee is an advisory board which, alongside our Scientific Advisory Committee, looks to engage our beneficiaries and rare disease community in identifying new projects for the charity, in assisting project development, and in reviewing and evaluating the charity’s work. The Patient Engagement Committee focuses its attention on our patient group training projects, so we can expand, improve and grow our support programmes. The role of Patient Engagement Committee members includes:

  • Evaluating Findacure’s current training projects
  • Exploring new projects Findacure could offer beneficiaries
  • Advising Findacure on the needs and priorities of patient groups in the rare disease space
  • Recommending and reviewing themes for the upcoming training programmes
  • Providing guidance on ways Findacure can improve its outreach to new and existing patient groups
  • Ad hoc support and guidance on training projects

I’m interested. Who can apply?


We are seeking up to seven members of the rare disease community to serve on our 2019-2021 Patient Engagement Committee. Anyone over the age of 18 can apply, but we are especially keen for individuals who have experience in the following areas:

  • Personal rare disease experience, either as a patient or care giver
  • Running services or support for rare disease patients and their families
  • Communications and/or outreach
  • The UK rare disease field as a whole

Full details, and terms of reference can be downloaded here.

Sounds great. How do I apply?


If you are interested in joining our Patient Engagement Committee, please apply by completing an application form by midnight on Monday 25th March.

If you have any questions or would like to discuss membership of the Committee in more detail, please contact our Events Manager, Mary Rose Roberts at

We look forward to receiving your application!