At Findacure, we are passionate about incorporating the patient group voice into our work, which is why we have our Patient Group Engagement Committee!
Since its establishment in 2017, 10 passionate and motivated members of our community have joined us to provide their unique insight, perspective, and guidance on our endeavours to transform the lives of rare disease patients.
Their support has been invaluable across the last four years. With their help we have developed, improved and integrated our patient group training projects, and dramatically re-designed the delivery of our e-learning resources (with our new platform to be announced imminently!)
We must also give huge thanks to our 2019-2021 members whose input assisted us in responding to the needs and priorities necessitated by COVID-19.
Findacure’s 2019 – 2021 Patient Engagement Committee members.
On the back row from left to right: Sandra, Sue, Wendy, Laurence, Libbie (Findacure), Rick (Findacure), Taryn (Findacure) and Alan. On the front row: Sally and Mary Rose (Findacure).
Now we are seeking the next round of applicants for our Patient Group Engagement Committee. Can you help guide Findacure through the next exciting chapter of its life?
What is the Patient Group Engagement Committee?
Our Patient Group Engagement Committee is an advisory board which engages our beneficiaries and the wider rare disease community in identifying new projects for the charity, assisting event and project development and in reviewing and evaluating the charity’s services.
The Committee looks at the full spectrum of our work, including our patient group training projects, our Drug Repurposing for Rare Diseases Conference, the Rare Disease Showcase Series, the Student Voice Prize and more.
The primary role of our Committee members is to provide insight, thoughts and guidance on:
- The needs and priorities of patient groups in the rare disease space
- Recommending and reviewing themes for upcoming programmes
- Evaluating our current catalogue of events and projects
- Exploring new projects we could offer beneficiaries
- Improving our outreach to new and existing patient groups
Each round of the Committee sits for a two-year term, with members meeting with Findacure two-to-three times a year. Membership on the Committee is unpaid and voluntary, but reasonable travel expenses will be covered where in-person meetings take place.
“I enjoyed seeing how the Findacure team work and being able to comment on the ideas and direction – it felt like really meaningful conversations. I always feel from the team how much you all care about patients and making a difference, which is really special.”
Patient Engagement Committee Member, 2019-2021
I’m interested. Who can apply?
We are seeking up to nine members of the rare disease community to serve on our 2021-2023 Patient Group Engagement Committee. At least two-thirds of our Committee members must be official representatives of rare disease patient groups or charities (e.g. a trustee, employee, formal volunteer). Anyone over the age of 18 can apply, but we are especially keen to hear from individuals with experience, skills or expertise in any of the following areas:
- Setting up, managing or working in a patient group or rare disease charity
- Running services or support programmes for rare disease patients and families
- Engaging with marginalised or under-represented communities and/or young people
- Creating accessible and educational resources
- Multi-stakeholder collaborations e.g. working with industry or healthcare professionals
- Drug repurposing and/or patient-led research
- Personal rare disease experience, either as a patient or care giver
We welcome and encourage applications from people of all backgrounds in the rare disease community. This includes, but is not limited to, Black, Asian and Minority Ethnic communities, people living with rare diseases and/or disabilities, and LGBTQ+ individuals.
Sound great, I want to join! What’s next?
We are delighted that you are interested in joining our Patient Group Engagement Committee! Before submitting an application, please make sure you read through our Committee Terms of Reference.
Provided you are happy with our terms, we welcome you to complete our application form. Applications will remain open until Friday 20th August, with the new Committee due to kick off in early September.
If you have any questions, or wish to discuss membership of the committee, please contact Mary Rose Roberts, our Head of Operations, at maryrose@findacure.org.uk.
Mary Rose Roberts
Head of Operations