Patient group mentoring

Our mentoring programme helps small patient groups reach new milestones by matching them to an experienced mentor for a year

Strong patient groups are crucial when it comes to rare diseases. Not only do they connect with and support isolated patients, but they can also be a driving force when it comes to research and campaigning for patients’ interests. Ensuring individuals who run patient groups – mostly patients or parents themselves – have the appropriate skills, knowledge and confidence to achieve their own goals is therefore of utmost importance.

With this in mind, BM Manifesto’s patient group mentoring programme provides rare disease support groups with an experienced mentor for a year. The project helps patient groups build their capacity and streamline their work in order to improve patient support services or increase their involvement in research. It is a fantastic opportunity for rare disease advocates to access expertise specific to their individual group’s needs and for mentors to develop their management and leadership qualities.

Don’t just take our word for it. Meet our community.

“Many of us volunteers might have specific expertise in something, but when you set up a rare disease patient group you have to do EVERYTHING. Being able to tap into a pool with professionals skills makes you believe you can actually do this.”

– 2014-2015 mentee

“This year has been unlike any year I have ever experienced. There are things that I feel it is possible to achieve that I could not have imagined before”

– 2014-2015 mentee

“My mentor approached the scheme with an open mind and a dynamic approach both to my needs and the objectives we set. She was able to both challenge and support me as priorities changed and opportunities presented themselves, which was just what I needed.”

– 2014-2015 mentee

“I felt like I was giving back to the rare disease community and helping an individual person-to-person with potential to help a whole group of rare disease patients made me feel part of making positive change, tiny step by tiny step.”

– 2014-2015 mentor

“When we began we were mums with aspirations. We have greatly grown in understanding and ability.”

– 2014-2015 mentee

How does the programme work?

The programme runs on an annual basis. Both mentees and mentors are invited to submit an application, which helps us match them based on their respective needs and skills. Once the programme is underway, BM Manifesto organises a launch event to give participants the opportunity to meet face-to-face and get support setting SMART objectives for the year. The pairs are then left to work together under their own steam, with BM Manifesto on-hand to offer support and guidance, including quarterly check-ins to ensure the pairs are keeping on-track. We also organise meet-ups to build a peer mentoring community, where everybody supports each other outside of their immediate pairs.

Who can apply?

Mentees: We welcome any and all rare disease patient groups to participate in the programme as mentees. Rare diseases are defined as conditions affecting less than 1 in 2,000 people. The ideal mentee will be motivated and have a clear idea of what they want to achieve on the programme, though the latter isn’t essential as we can help mentees set objectives for the year.

Mentors: We welcome individuals with expertise in business management, running charities or patient groups, rare diseases, consultancy and much more to apply to be mentors. If you believe you have something to offer to a rare disease patient group, whether that be advice on time management, ideas for patient involvement in research, or more simply a listening ear, we want to hear from you!

What is the time commitment?

The time commitment is normally around 2-3 hours per month, though this largely depends on how active the patient group is. Patient groups that are more active, perhaps with a full-time member of staff, will move through tasks quicker, giving mentors a larger role to play. Groups that are fully volunteer-led generally have less time to move through tasks, so they often require less overall input from mentors.

It is common for pairs to catch up once every two weeks at a set time, when they can discuss what the patient group has done, work through challenges, and set new tasks to complete before the next meeting; but this is just a framework, and pairs can decide how best to arrange meetings for themselves.

We would like to thank Sobi, Bespak and the Big Lottery Fund for their financial support this year.

How do I get involved?

We are now recruiting mentees and mentors for the 2024-21 patient group mentoring programme. Applications are open until Wednesday 4th of March, with the scheme due to officially launch in London on 18th March at the Royal Institution.

Don’t just take our word for it. Meet Sarah.

When Sarah’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays, there was no UK organisation for her to turn to for support, and very little information available.

Determined to support the Norrie community herself, Sarah applied to BM Manifesto’s peer mentoring programme and was matched to Kamlesh, a consultant to the pharmaceutical industry. Within seven months, the Norrie Disease Foundation had registered as an official charity and launched a new website to provide credible information to families, specialists, schools and the general public. They have also started their own mentoring scheme for families, launched a PhD studentship at UCL GOSH, and continue to arrange community meet-ups.

Of all their impressive achievements, arguably their greatest success is the strong, supportive community that has been created. After being told by medical professionals that there were only 6 Norrie families in the UK; the Norrie Disease Foundation is now in touch with over 30.

“I would like to say a massive thank you to BM Manifesto for making this opportunity possible and to Kamlesh for his support. Without question, if it hadn’t been for this programme and Kamlesh, we wouldn’t be where we are today.”