Applications are open for the 2021-22 round of our patient group mentoring programme!

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 sixth round of our patient group mentoring programme, due to kick off in July 2021.

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.

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.

“When I first started working for our organisation, I had no experience in the charity world. Being part of the mentoring scheme has helped me immensely in building my confidence and taking our charity forward. Thank you.”

– Patient Group Mentee, 2020-21 programme

What can you hope to achieve on the programme?

The programme helps patient groups get established, build their capacity and streamline their work in order to improve patient support services, implement new projects 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:

[Image description: An icon of bricks stacked in a hexagon shape.]

  • Register as a charity
  • Recruit and appoint a board of trustees
  • Establish a medical advisory group
  • Develop advocacy and leadership skills
  • Write policies and strategies
  • Build a team of staff or volunteers

[Image description: An icon of a blue megaphone.]

  • Launch a website
  • Design charity branding
  • Run an awareness campaign
  • Set up social media accounts 
  • Write a comms. strategy
  • Start a YouTube channel
  • Get SEO savvy

[Image description: An icon of four people holding hands in a circle, drawn from above their heads.]

  • .Set up a helpline
  • Run a family conference
  • Create a health passport
  • Write patient information leaflets
  • Develop nutritional guides
  • Improve accessibility and inclusivity
  • Support mental health

[Image description: An icon of a purple scientific laboratory flask. There is liquid in it and there are bubbles rising out of the top.]

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

[Image description: An icon of bricks stacked in a hexagon shape.]

  • Register as a charity
  • Recruit and appoint a board of trustees
  • Establish a medical advisory group
  • Develop advocacy and leadership skills
  • Write policies and strategies
  • Build a team of staff or volunteers

[Image description: An icon of a blue megaphone.]

  • Launch a website
  • Design charity branding
  • Run an awareness campaign
  • Set up social media accounts 
  • Write a comms. strategy
  • Start a YouTube channel
  • Get SEO savvy

[Image description: An icon of four people holding hands in a circle, drawn from above their heads.]

  • .Set up a helpline
  • Run a family conference
  • Create a health passport
  • Write patient information leaflets
  • Develop nutritional guides
  • Improve accessibility and inclusivity
  • Support mental health

[Image description: An icon of a purple scientific laboratory flask. There is liquid in it and there are bubbles rising out of the top.]

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

And much, much more!

“I like to help other small charities grow and learn from the experiences that we have had over the last 10 years. I believe we should all share to help each other develop!”

– Patient Group Mentor, 2020-21 programme

How does the programme work?

The Patient Group Mentoring Programme is a 12-month programme. The first step to joining the scheme is filling out an application form (links are provided later in the page). This will help us match mentoring pairs based on their respective needs, preferences and skills.

Once pairs have been matched, Findacure will hold a virtual launch event in mid-July. This is a great opportunity for pairs and the wider mentoring cohort to meet for the first time. The launch event will also provide an overview of the programme, as well as some top tips for a successful year-long mentoring partnership. 

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 check-in calls three times a year to follow up on progress and offer support, as well as organising programme-wide meet-ups and training sessions.

Participation for all mentors and mentees is free and remuneration is not provided. More detailed information on the programme in-depth can be found in a applicant guide. 

The first step to joining the programme is filling out an application form (links are provided later in the page). This will help us match mentoring pairs based on their respective needs, preferences and skills.

Once pairs have been matched, Findacure will hold a virtual launch event in mid-July. This is a great opportunity for pairs and the wider mentoring cohort to meet for the first time. The launch event will also provide an overview of the programme, as well as some top tips for a successful year-long mentoring partnership. 

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 check-in calls three times a year to follow up on progress and offer support, as well as organising programme-wide meet-ups and training sessions.

Participation for all mentors and mentees is free and remuneration is not provided.

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. 

As a UK based charity, we prioritise applications from organisations serving UK patients. However, we welcome and encourage applications from outside of the UK. In previous years, we have seen mentees and mentors from Germany, France, Israel, Canada, and the USA successfully participate in the programme. 

 

Mentees

We welcome any and all rare disease patient groups (and aspiring 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 needs to be motivated and have a clear idea of what they want to achieve on the programme. They must be willing to discuss issues openly with their mentor, and be receptive to new ideas.

As a guide, we recommend mentees dedicate a minimum of two working days each month towards working on their set goals. 

A patient group may only apply to the programme once in any given year, but may be represented by a maximum of two individuals who will work together on a singular set of goals. Patient groups interested in the programme should appoint a “Lead Mentee” from the group who will apply for the programme and be the primary point of contact throughout the year. 

We also require a senior person at the mentee’s organisation to fill in a short permission form stating that the organisation is aware of and happy for the mentee to take part in the programme, and that they have read and understand the 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

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!

We particularly welcome individuals with expertise in business management, running charities/patient groups, communications, consultancy, coaching and much more to apply to be mentors.

It is not a requirement that mentors have specific experience or background in rare diseases, so long as you have other applicable skills. We recommend mentors set aside a minimum of two hours per month to help their mentee achieve their goals – this is inclusive of meetings and all other forms of communications (e.g. emails and phone calls). 

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.

Still unsure? Here are some specific skills which could help: trial design, accounting, event planning, reimbursement, human resources, social media, leadership, advocacy, data handling, fundraising, research, copywriting, web design, strategy, and much more!

Benefits of taking part for mentors

  • Development of your personal leadership and coaching styles
  • Opportunity to have a direct and positive influence on rare disease communities
  • Personal satisfaction through supporting the development of others
  • Career development and peer recognition
  • 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
  • Access to new networks through the mentoring group

Mentees

We welcome any and all rare disease patient groups (and aspiring 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 needs to be motivated and have a clear idea of what they want to achieve on the programme. They must be willing to discuss issues openly with their mentor, and be receptive to new ideas.

As a guide, we recommend mentees dedicate a minimum of two working days each month towards working on their set goals. 

A patient group may only apply to the programme once in any given year, but may be represented by a maximum of two individuals who will work together on a singular set of goals. Patient groups interested in the programme should appoint a “Lead Mentee” from the group who will apply for the programme and be the primary point of contact throughout the year. 

We also require a senior person at the mentee’s organisation to fill in a short permission form stating that the organisation is aware of and happy for the mentee to take part in the programme, and that they have read and understand the 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

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!

We particularly welcome individuals with expertise in business management, running charities/patient groups, communications, consultancy, coaching and much more to apply to be mentors.

It is not a requirement that mentors have specific experience or background in rare diseases, so long as you have other applicable skills. We recommend mentors set aside a minimum of two hours per month to help their mentee achieve their goals – this is inclusive of meetings and all other forms of communications (e.g. emails and phone calls). 

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.

Still unsure? Here are some specific skills which could help: trial design, accounting, event planning, reimbursement, human resources, social media, leadership, advocacy, data handling, fundraising, research, copywriting, web design, strategy, and much more!

Benefits of taking part for mentors

  • Development of your personal leadership and coaching styles
  • Opportunity to have a direct and positive influence on rare disease communities
  • Personal satisfaction through supporting the development of others
  • Career development and peer recognition
  • 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
  • Access to new networks through the mentoring group

If you are unsure about what you could achieve or contribute to the programme, are unclear if you are eligible, or have any other questions please contact [email protected] for an informal chat with our Projects Team. 

Mary Rose Roberts

Head of Operations

Philippa Norman

Projects Coordinator

Hannah Harvey

Projects Administrator

“Findacure paired me up perfectly. My mentor was amazing and a game-changer. Honestly, if it wasn’t for him, and this programme, I don’t think that we’d be where we are now. It really set us up in the right direction and focused us on what we needed to do.”

– Patient Group Mentee, 2019-20 programme

The programme in action: meet Bhavna and Kamlesh

Bhavna

CEO, Stargardt’s Connected

Bhavna’s world changed forever in September 2015 when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, degenerative retinal condition that slowly leads to sight loss. 

Within days of receiving the news, Bhavna exhausted the internet and found out everything there was to know about Stargardt’s. She reached out to charities, groups and sight-loss communities looking for help, answers and connections. She realised, “There wasn’t any specific support for Stargardt’s.” Despite the heart-breaking diagnosis, Bhavna wanted to do something positive and reach out to others affected by Stargardt’s. This was when she decided it was up to her to establish the first U.K. Stargardt’s patient group. 

It was in her rare journey that she found Findacure and joined our Patient Group Mentoring Programme. She was paired with Kamlesh, a five-time mentor on our programme. Together, Bhavna and Kamlesh have:

  • Registered Stargardt’s Connected as an official charity
  • Established a Board of Trustees
  • Established and support a global community of Stargardt’s patients and families
  • Been featured on BBC’s Children In Need alongside Ethan, who is now 13
  • Set up a website and built a team
  • Have a Charity Ambassador

They aren’t stopping there either! Since completing the programme, the pair are currently working on establishing a patient registry to encourage participation in research. Bhavna is building her community via virtual Zoom meetups for patients, families and kids, and is hoping to bring on paid staff in the near future!

Kamlesh

Founding Director, PharmacoMedics

Bhavna

CEO, Stargardt’s Connected

Bhavna’s world changed forever in September 2015 when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, degenerative retinal condition that slowly leads to sight loss.

Within days of receiving the news, Bhavna exhausted the internet and found out everything there was to know about Stargardt’s. She reached out to charities, groups and sight-loss communities looking for help, answers and connections. She realised, “There wasn’t any specific support for Stargardt’s.” Despite the heart-breaking diagnosis, Bhavna wanted to do something positive and reach out to others affected by Stargardt’s. This was when she decided it was up to her to establish the first U.K. Stargardt’s patient group.

It was in her rare journey that she found Findacure and joined our Patient Group Mentoring Programme. She was paired with Kamlesh, a five-time mentor on our programme. Together, Bhavna and Kamlesh have:

  • Registered Stargardt’s Connected as an official charity
  • Established a Board of Trustees
  • Established and support a global community of Stargardt’s patients and families
  • Been featured on BBC’s Children In Need alongside Ethan, who is now 13
  • Set up a website and built a team
  • Have a Charity Ambassador

They aren’t stopping there either! Since completing the programme, the pair are currently working on establishing a patient registry to encourage participation in research. Bhavna is building her community via virtual Zoom meetups for patients, families and kids, and is hoping to bring on paid staff in the near future!

Kamlesh

Founding Director, PharmacoMedics

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

– Patient Group Mentor, 2015 programme

How to apply

Before submitting your application, please make sure you read through the applicant guide below, to familiarise yourself with the programme and the terms and conditions. 

If you are interested in being involved in the programme, please complete the relevant form below. Completed applications must be submitted to Findacure no later than midnight on Sunday 4th July. 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.

The programme’s virutal launch event will take place on Wednesday 14th July and we recommend all prospective mentees and mentors attend. Further details on the event will be sent to individuals once we have received your application. 

With thanks to the funders of our Empowerment Programme