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Applications for our patient group mentoring programme are open!

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?

Well then, we have some great news for you! We are now recruiting mentees and mentors for the fifth round of our patient group mentoring programme, due to kick off in March 2020.  

What is the purpose of the 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 patient group mentoring programme provides an opportunity for individuals from a rare disease support group to be paired with an experienced mentor for the course of a year.

What can you hope to achieve on the programme?

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. By encouraging communication across mentoring pairs, it also aims to build a more unified rare disease community that works together for mutual benefit.

Patient groups join our programme for all sorts of reasons. Here are just a few examples of things you might be looking to do:

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  • Register as a charity
  • Appoint a board of trustees
  • Recruit a medical advisory board
  • Launch a charity membership
  • Establish policies and strategies
  • Build a team

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  • Develop a website
  • Design charity branding
  • Run an awareness campaign
  • Get set up on social media
  • Write a comms. strategy
  • Start a YouTube channel

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  • .Set up a helpline
  • Run a family conference
  • Create a health passport
  • Write patient information leaflets
  • Develop nutritional guides
  • Launch a youth support service

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  • Write medical guides
  • Set up a natural history study
  • Launch a registry
  • Run a cost of illness study
  • Engage with researchers
  • Support a clinical study
  • Get access to treatment

And much, much more!

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.

Once pairs have been matched, Findacure will hold a launch event in mid-March. 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.

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, as well as organising programme-wide meetups and training sessions throughout the year.

Participation for all mentors and mentees is free.

Who can apply?

The programme is open to both new participants and those who have been involved before. Patient groups who have previously been mentees on the programme are actively encouraged to act as mentors on the scheme the next time around. If they wish to apply to be mentees again, Findacure will work to accommodate them but cannot guarantee continuation with the same mentor. Furthermore, priority will be given to organisations who have not participated in the scheme previously.


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 2000 people. 

The ideal mentee will be motivated and have a clear idea of what they want to achieve on the programme.

 Patient groups interested in the programme should appoint an individual from the group who will both apply and participate in the programme.

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. 

Benefits of taking part for mentees

  • Access to new areas of expertise
  • Impartial advice and encouragement in developing projects
  • Advice on developing personal strengths and overcoming weaknesses
  • Improved self-confidence to take on challenges
  • Exposure to new ideas and ways of thinking
  • Access to new networks through the mentoring group


We welcome individuals with expertise in business management, running charities or patient groups, communications, 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!

It is not a requirement that mentors have specific experience or background in rare diseases, so long as you have other applicable skills. Those interested in becoming mentors may be supported by their company, but their participation in the programme is as an individual and considered separate from any other affiliations.

Benefits of taking part for mentors

  • Development of your personal leadership and coaching styles
  • Opportunity to reflect on your own goals and practices
  • Exposure to fresh perspectives, ideas, and approaches
  • Insight into the challenges and issues facing rare disease patient groups
  • Personal satisfaction through supporting the development of others
  • Career development and peer recognition
  • Access to new networks through the mentoring group

If you are unsure whether you are eligible or what you can get out of the mentoring programme, please contact our Head of Operations on [email protected] for an informal chat. 

How to apply

l Before submitting your application, please make sure you read the programme handbook and familiarise yourself with the terms and conditions.  

Please note: 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. If you have any questions about this, please contact [email protected]

The programme’s launch event will take place on Wednesday 18th March at the Royal Institute, London.
We encourage all applicants to sign up for the event once they have completed their application.

If you are interested in being involved in the programme, please complete the relevant application form below. Completed applications must be submitted to Findacure no later than 10am on Wednesday 4th March. We endeavour to match all applicants to a mentee/mentor, meaning if you have applied, it is highly likely you will be invited to participate for the year.

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