Give me a lightning quick summary⚡
  • Our Patient Group Mentoring Programme gives patient groups the tools, confidence and connections needed to accomplish their group’s specific goals. You are never too small or too uncertain to take the leap and apply for this programme. All you need is a clear idea of what you want to achieve, the motivation to make it happen and the time to put your ideas into action!
  • This is the year that you reach new milestones, as either a mentee or mentor on the programme. Make 2021 the year of growth. Increase your confidence, knowledge and skills alongside your fellow rare disease patient groups and advocates. We want to see you go from grasshopper to master over the course of a year and graduate the scheme with a renewed sense of self-belief and self-worth. Although you may be a little dog, it’s time that you applied that big dog attitude!
  • We’ve had mentors and mentees from all over the world join this programme: Germany, France, Israel, Canada, USA and UK. We’ve seen pairs secure National Lottery Funding, get a drug approved by NICE, register as a charity and forge partnerships with industry and fellow patient groups to bring about real change. Whatever your goals and whatever your passions, we’ll work to pair you with a mentor who has the skills and expertise needed to set the wheels in motion.
  • The application deadline is 4th July (Three cheers for America!) and our 2021-22 Programme will officially launch on 14th July.

“Mentoring is a brain to pick, an ear to listen and a push into the right direction.” – John C. Crosby

When patients or parents receive a rare diagnosis, they quickly turn to patient groups for reassurance, support and credible information. Strong patient groups are vital to their rare community, as it’s they who advocate for research, funding and patient rights on behalf of the community.

The sad reality is that only half of rare diseases have a designated support group. Patient groups that do exist are either patient or parent led, small or voluntarily run. Leading a rare disease support group or charity can be an overwhelming and lonely experience, especially when you don’t come from a healthcare or charity background that teaches certain skills.

We’re here to tell you that the isolation and confusion stops here!

Apply for our 2021-22 Patient Group Mentoring Programme

If you’re reading this thinking:

On registering as a charity: “It was something that I wanted to do, but I was too scared to take that leap.”

On having a mentor: “It would be brilliant if I had a mentor that could give me direction on what I’m doing because I’m not sure how to go about it.”

On building a team: “I have done everything on my own, so it’s quite hard to delegate. You do everything so I couldn’t say what I was doing because I was doing everything so I found building a team tough.”

We want you to know that: “One thing you’re not, is on your own.”

Our Patient Group Mentoring Programme gives patient groups the tools, confidence and connections needed to accomplish their group’s specific goals. You are never too small or too uncertain to take the leap and apply for this programme. All you need is a clear idea of what you want to achieve, the motivation to make it happen and the time to put your ideas into action!

This is the year that you reach new milestones, as either a mentee or mentor on the programme. Make 2021 the year of growth. Increase your confidence, knowledge and skills alongside your fellow rare disease patient groups and advocates. We want to see you go from grasshopper to master over the course of a year, and graduate the scheme with a renewed sense of self-belief and self-worth. Although you may be a little dog, it’s time that you applied that big dog attitude!

Still sitting on the fence?

Start pulling those splinters out!

We strongly encourage you to apply for our sixth round of the Patient Group Mentoring Programme. Don’t take it from just us, though! We asked past participants to give you some advice on how you can benefit from the programme should you decide to apply.

“A good mentoring experience depends on the pairing and how committed you are.”

“Just know that you’re not the only one doing this on your own. It’s nice to link up with others.”

“I will become better as a patient group leader if I’m confident of who I am and don’t worry about making mistakes because everyone makes mistakes.”

“Connections are really important. Connections can mean not just connecting with your patient community, but with pharma and professionals.”

“To reach out for help and network are a really important aspect of setting up a charity I think.”
“Be realistic about what you can achieve.”

“What I realised is that the vision that I had will happen, but it takes time. So by connecting with more people, you’ll be able to get your team.”

“With more people knowing about you, you’re going to find they’re more likely to fundraise for you. It’s about building that network.”

“Most patient groups do everything on their own and that’s one thing we need to become better at in terms of getting people to help and knowing how to do that.”

 

“The more you talk about your disease and charity, the more you’re open about things, the more you realise that help comes from places you don’t realise.”

“Just believe in yourself and say give it a go. There was nothing there before, even if it didn’t work out, it didn’t work out, at least you gave it a shot. It’s about taking risks.”

“You don’t have to be perfect to do what you’re doing.”

“Pre-Patient Group Mentoring time, I wanted to do everything! What I learned from mentoring is to just focus on three or four things and do them really well.”

Looking for common themes? We found six (Did we mention that it’s our sixth round? Coincidence? We think not!)

• A sense of community

• Building a network

• Encouragement

• Learning from others who are in your shoes

• Making decisions that are best for YOU

• Making meaningful change together

We’ve had mentors and mentees from all over the world join this programme: Germany, France, Israel, Canada, USA and UK. We’ve seen pairs secure National Lottery Funding, get a drug approved by NICE, register as a charity and forge partnerships with industry and fellow patient groups to bring about real change. Whatever your goals and whatever your passions, we’ll work to pair you with a mentor who has the skills and expertise needed to set the wheels in motion.

Ready to turn ideas into action?

There we go! Big dog attitude initiated!

View our 2021-22 Patient Group Mentoring Programme page to learn how to apply and see what can be achieved with a little positivity, hard work and collaboration.

The application deadline is 4th July (Three cheers for America!) and our 2021-22 Programme will officially launch on 14th July.

We’re excited to see what you achieve in a year’s time, both personally and professionally, so apply today!

Why the 2021-22 Patient Group Mentoring Programme is for you

by Blayne Baker time to read: 8 min
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