Are you looking to set up or grow an advocacy group for a rare disease? Or are you looking to share your professional experience and skills to benefit others? We are recruiting mentees and mentors for our third peer mentoring scheme, due to kick-off in January 2018.
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, Findacure’s peer mentoring programme provides rare disease patient groups with a mentor for a year. The project aims to help 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.
The first step to joining the programme is filling out an application form. This will help us match mentoring pairs based on their respective needs and skills. While we endeavour to include every patient group who applies, we cannot guarantee that we can find a suitable mentor, and vice versa.
Once pairs have been matched, Findacure will hold a launch event in early February. This is a great opportunity for mentoring pairs to meet face-to-face, and for everyone to meet others involved in the scheme. We often find that mentees and mentors learn a lot from each other and other mentors too! The launch event also will help pairs to set SMART objectives for the year-long programme.
Following the launch event, all pairs will finalise their objectives with support from Findacure staff. They will then be left to work together to achieve these goals under their own steam. Findacure will hold quarterly calls to check-up on progress and offer support, and we will always be on hand for mentees or mentors who need assistance. A few more programme-wide meet-ups will be scheduled across the year, including a closing celebratory event.
Wendy’s 9 year-old son was born with Norrie disease. Norrie disease causes blindness from birth and hearing loss. It can also cause cognitive impairment, autism and mobility issues. Until 2015 there was no dedicated UK charity to support the Norrie community, and there was very little information available to families and to visual and hearing impairment specialists.
In December 2015, Wendy and two other Norrie families met for the first time. They knew they wanted to work together to support the Norrie community, but they had no idea how to reach their goals. Wendy applied to Findacure’s peer mentoring scheme and was matched to Kamlesh, a consultant to the pharmaceutical industry, in September 2016. The pair set their goals and began working on them straight away. By January 2017 the Norrie Disease Foundation had registered as an official charity, and they launched a new website in April to provide credible information to families, specialists, schools and others. They also formed a Medical Advisory Board.
“I would like to say a massive thank you to Findacure 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.”
Medical professionals had estimated in 2015 that there were 6-12 Norrie families in the UK. The Norrie Disease Foundation is now in touch with over 30. They have also started their own mentoring scheme for families, launched a PhD studentship at UCL GOSH, and continue to arrange community meet-ups.
Wendy is incredibly grateful to Kamlesh for his support throughout the year and truly believes they wouldn’t have achieved so much without him. We would like to congratulate Wendy on such a productive year, and say a huge thank you to Kamlesh for volunteering as a mentor on the programme.
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 necessary and we can help mentees set objectives for the year.
If you are unsure whether you are eligible or what you can get out of the mentoring programme, please contact our Projects Officer on [email protected] and she will be happy to chat.
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!
Mentors from previous schemes have often told us they felt unsure of what they could offer at the beginning of the scheme, but that they realised something as simple as a sounding-board and strategy-checker was invaluable to their mentees. Mentors get a lot of satisfaction from helping patient groups in these ways, and it is a great way to develop and demonstrate their leadership skills.
Please note: While multiple people from the same patient group can be involved in a single partnership, one person must be the nominated ‘mentee’ – the point of contact and person responsible for involvement in the programme. A single patient group cannot apply for multiple people to be in multiple partnerships. We also require written approval from a senior person at the mentee’s organisation stating that they’re happy for the mentee to take part and that they will be the nominated ‘mentee’.
Click here for a full set of Terms and Conditions.
If you are interested in being involved in the programme, please fill out an online application form by Wednesday 10th January. Please note that the programme’s launch event will take place on Wednesday 31st January – we would love it if you could save the date if you are intending to apply to the scheme.
We are grateful to Sobi and Bespak for supporting this project with a grant. Please note, this project is operated independently by Findacure and the contributors have no editorial control of its content.