RARE INSIGHTS |
Making the RARE voice heard
 Don’t Reinvent the Wheel - The 2018 Findacure |
| There are times when everyone craves support – whether that’s an unbiased perspective to help tackle life’s problems or more simply to validate a tough decision. This type of support is often hard to come by, but can make an enormous impact on an individual’s life and work. |  |
When a patient, parent, or advocate bravely takes the plunge and sets-up a patient group, support is crucial. New groups often lack experience in the charity, healthcare, or research sectors, or in the provision of social care and support. Despite this, all have motivation and determination in abundance. Any skills gap can easily be filled by regular guidance from an experienced individual.
This is the kind of support that the Findacure Peer Mentoring Programme provides to rare disease patient groups. Now entering its third year, the project pairs groups with an experienced mentor for a year and together the mentee and mentor determine their goals for the next 12 months. The group and the mentee have regular calls or meetings to help the group progress towards their goals and the overall intention is to help patient groups meet their aims; be that to build their capacity, streamline their work, improve their patient support services, or increase their involvement in research.
We are very proud of the achievements of our 33 mentoring graduates to date. Their accomplishments are too many to list, but the scheme has helped seven new charities to secure official status, seen child-focussed literature and forums developed, and even helped patient representatives secure access to much needed treatments.
This is the kind of support that the Findacure Peer Mentoring Programme provides to rare disease patient groups. Now entering its third year, the project pairs groups with an experienced mentor for a year and together the mentee and mentor determine their goals for the next 12 months. The group and the mentee have regular calls or meetings to help the group progress towards their goals and the overall intention is to help patient groups meet their aims; be that to build their capacity, streamline their work, improve their patient support services, or increase their involvement in research.
We are very proud of the achievements of our 33 mentoring graduates to date. Their accomplishments are too many to list, but the scheme has helped seven new charities to secure official status, seen child-focussed literature and forums developed, and even helped patient representatives secure access to much needed treatments.
 | Findacure's Peer Mentoring Programme was fundamental in helping the Norrie Disease Foundation (NDF) get off the ground. |
| Wendy Horrobin, co-founder of the Norrie Disease Foundation and a 2017 peer mentoring graduate, was kind enough to share her experience on the scheme with us. |
“When we met Dr Kamlesh Sheth we were three families each with a child with Norrie disease - we knew that we wanted to support the UK Norrie community and start fresh research, initially into hearing loss but we weren't sure how to go about it.
“We were thrilled to learn that we had secured Kamlesh as our mentor as we were particularly interested in working with someone with a medical background. Our year together took off at a mighty pace. We set and achieved our peer mentoring objectives ahead of time, which included setting our charity objectives, registering as a charity, establishing an NDF medical advisory board, set up the NDF website and the NDF launch, and establish research into hearing loss under Professor Maria Bitner-Glindziciz's team at UCL Great Ormond Street Institute of Child Health (funded by Newlife and Sparks).
“Having a mentor helps you prioritise work, manage your time more effectively, and become more confident in reaching out for help. Kamlesh's support, patience, and advice was invaluable in getting the NDF to where we are today, and his words of wisdom are frequently called upon as we grow the charity.”
“We were thrilled to learn that we had secured Kamlesh as our mentor as we were particularly interested in working with someone with a medical background. Our year together took off at a mighty pace. We set and achieved our peer mentoring objectives ahead of time, which included setting our charity objectives, registering as a charity, establishing an NDF medical advisory board, set up the NDF website and the NDF launch, and establish research into hearing loss under Professor Maria Bitner-Glindziciz's team at UCL Great Ormond Street Institute of Child Health (funded by Newlife and Sparks).
“Having a mentor helps you prioritise work, manage your time more effectively, and become more confident in reaching out for help. Kamlesh's support, patience, and advice was invaluable in getting the NDF to where we are today, and his words of wisdom are frequently called upon as we grow the charity.”
As you can see, the peer mentoring programme can have a significant impact on a patient group, and Findacure are now looking for both mentees and mentors to join our 2018 peer mentoring cohort.
Anyone is welcome to join the programme and benefit from this one-to-one support. Mentees may be a newly formed group looking to secure charitable status or a long-formed charity embarking on a new project. The ideal mentee will be motivated and have a clear set of goals for the year ahead.
Alternatively, if you have an interest in rare diseases, expertise in business management, patient groups, charities, or consultancy and are keen to share your knowledge with others, why not apply to become a mentor? Mentoring can be daunting initially, but many find that simply acting as a sounding-board and strategy-checker is invaluable to their mentees. Mentors get a lot of satisfaction from helping patient groups in these ways and it is a wonderful way to develop and demonstrate your leadership skills.
If you would like to learn more about the scheme or apply to join the 2018 cohort, please visit www.findacure.org.uk/peer-mentoring-2018. Feel free to contact the Findacure team with any questions before the 10 January deadline and to discuss the programme in the Rare Revolution community where you will find some of our graduates.
Anyone is welcome to join the programme and benefit from this one-to-one support. Mentees may be a newly formed group looking to secure charitable status or a long-formed charity embarking on a new project. The ideal mentee will be motivated and have a clear set of goals for the year ahead.
Alternatively, if you have an interest in rare diseases, expertise in business management, patient groups, charities, or consultancy and are keen to share your knowledge with others, why not apply to become a mentor? Mentoring can be daunting initially, but many find that simply acting as a sounding-board and strategy-checker is invaluable to their mentees. Mentors get a lot of satisfaction from helping patient groups in these ways and it is a wonderful way to develop and demonstrate your leadership skills.
If you would like to learn more about the scheme or apply to join the 2018 cohort, please visit www.findacure.org.uk/peer-mentoring-2018. Feel free to contact the Findacure team with any questions before the 10 January deadline and to discuss the programme in the Rare Revolution community where you will find some of our graduates.
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