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 fourth peer mentoring programme, due to kick-off in January 2019.
What is Findacure’s peer mentoring programme?
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.
How does the programme work?
The first step to joining the programme is filling out an application form (links at the bottom of this page). 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 late January. This is a great opportunity for mentoring pairs to meet face-to-face, and for everyone to meet the rest of the cohort. The launch event also will help pairs to set SMART objectives for the year-long programme. By encouraging communication across mentoring pairs, the programme aims to build a more unified rare disease community that works together for mutual benefit.
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.
Don’t just take our word for it. Meet Carlos.
Carlos was diagnosed with hATTR amyloidosis, a rare hereditary disease that affects the nervous and cardiac systems, at the age of 40. A successful hand surgeon, Carlos faced losing his career due to the loss of limb function and heart failure that hATTR amyloidosis causes. Carlos’s sister was also diagnosed with the condition and sadly their mother passed away as a result of it.
In 2017, two effective treatments had been discovered and were in the early stages of assessment under NICE’s Highly Specialised Technology appraisal process. This process assesses whether treatments are cost-effective enough to be paid for by the NHS. Carlos and a group of other patients decided to set up a patient association to represent their voices and ensure that the treatments became available in the UK.
Carlos came to Findacure for support and joined our peer mentoring programme in January 2018. He was thrilled to be paired with Jill, a previous Findacure peer mentee and founder of the LPLD Alliance. With support from Jill, Carlos has made incredible progress and has already:
- successfully set up the UK ATTR Amyloidosis Patients’ Association
- identified 150 patients in the UK
- written a press release of his story which was published by 160 regional and 10 national news outlets, including BBC news, and shared widely online, reaching patients across the world
- set up a website for The UK ATTR Amyloidosis Patients’ Association
- been a representative at key meetings with NICE concerning treatment progress, to ensure the patient voice is heard
- secured approval from the European Medicines Agency to recommend treatments become available to patients in the UK
- formed an International Alliance for the disease to reach patients across the globe
Carlos is currently in the process of registering the UK ATTR Amyloidosis Patients’ Association as a charity which will open even more doors for the patient group. The group is also planning to bring patients together for their first group meet-up in January 2018; an information event at the Royal Free Hospital.
We would like to say a huge congratulations to Carlos for achieving so much, and of course a huge thank you to Jill for helping him get this far.
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 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 and Communications Manager 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 a senior person at the mentee’s organisation to fill in a short form stating that they’re happy for the mentee to take part and that they understand the programme’s Terms and Conditions.
Click here for a full set of Terms and Conditions.
How to apply
If you are interested in being involved in the programme, please note that the deadline for filling out an online application form has been extended to 9am on Thursday 10th January. The programme’s launch event will take place on Wednesday 30th January in London and it would be great if you could register once you have applied (you will be sent a link). We endeavour to match all applicants to a mentee/mentor, meaning if you have applied, it is highly likely that you will be invited to participate for the year.
In the mentee application form, we ask for a senior person at your organisation to fill in our permission form. This is to confirm that they are happy for you to take part in the programme, that they understand you will be the primary mentee and point of contact throughout the year, and that they have read the full Terms and Conditions of the programme. You can download the permission form here. If you have any questions about this, please contact [email protected]rg.uk.
We are grateful to Sobi 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.