Peer Mentoring Programme 2018

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.

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. 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.

Participation for all mentors and mentees is free. To find out more, check out our Peer Mentoring Introductory Handbook or email our Projects Officer on [email protected].

Don’t just take our word for it. Meet Wendy.

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.

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 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.

How to apply

If you are interested in being involved in the programme, please fill out an online application form by Wednesday 10th January.

Mentee application form

Mentor application form

Disclaimer

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.

Drug Repurposing for Rare Diseases Conference 2018

Findacure is pleased to announce our 2018 Drug Repurposing for Rare Diseases Conference!

 

Taking place on Tuesday 27th February, at the Royal College of Nursing in London, our annual conference will bring together patient groups, clinicians, researchers, and life science professionals, to discuss the latest developments in drug repurposing, and its role in the future of rare disease treatment.

Delegates will hear examples of excellent practice of drug repurposing in rare diseases, and make connections with rare advocates in and outside of their respective fields. Prizes will also be awarded to the winners of our 2017 ‘Student Voice‘ essay competition.

The afternoon will include our ‘famous’ lightning talk session where delegates will have the opportunity to propose their own five minute talks. If you are interested in taking part in this, please fill out the appropriate boxes on the registration form. Successful speakers will be contacted in late January.

Please join us to celebrate Rare Disease Day 2018 and show your support for a united rare disease community.

Sponsorship opportunities for this event are available. If you are interested in supporting our conference, please contact [email protected].

Tickets are on sale now

With thanks to our sponsors

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We would like to say thank you to our sponsors for providing financial support for this event. This event has been solely organised by Findacure and our sponsors have not determined the content or organisation. All funds received by pharmaceutical companies have been used in accordance with the ABPI code.

Cambridge Half Marathon 2018

Fancy a challenge? Be one of the 9000 people to fill the streets of Cambridge on Sunday 4th March in the 2018 Cambridge Half Marathon. The 13.1 mile run will explore the beautiful and historic city of Cambridge and we have a golden opportunity for you to take part!

Findacure are pleased to announce that we have places available for 10 lucky runners! All we ask for is a £25 registration fee to secure your place and a suggested fundraising target of £300. General individual entries are nearly sold out and also come at a higher price than our registration fee, so don’t wait to grab your place with Team Findacure! As an extra incentive, we are excited to offer one of our running vests for free to every fantastic runner who joins our team.

Want to be a part of Findacure’s 2018 Cambridge Half Marathon team? Get in touch with our Fundraising Officer, Katie at [email protected].

Why run for Findacure?

We would love for you to be part of Team Findacure! We are a small charity based in Cambridge, and really value all the hard work and effort our fundraisers put in. Every pound really does make a difference to the work we do in the rare disease community.

Although 3.5 million people in the UK live with a rare disease, many face isolation and have little hope for a treatment. Only half of the 7000 rare diseases have a patient support group set up in the UK, and only 400 of them have a licensed treatment. Because patient populations are so small, there is very little incentive or funding for researching them.

Findacure is a fantastic charity that is building the rare disease community by helping patient support groups to establish or grow. We have also launched our own non-profit drug repurposing project, which aims to bring treatments to patients much faster and cheaper than novel drug discovery. This is in the hope that fewer patients have to face the isolation, devastation and pain that rare diseases all too often inflict.

The Student Voice 2017

Do you want to be a published scientist?

You can be, with the return of Findacure’s essay competition, The Student Voice! As if that wasn’t enough entrants also have the chance to win a cash prize of up to £200, and attend our scientific conference.

UPDATE – Deadline extension!

For the first time Findacure have decided to extend the deadline of the Student Voice 2017 by one week. Essays can now be submitted as late as the 9am (UK time) on the 20th of November. There is still plenty of writing time available, so why not start your entry today?

There are over 7,000 rare diseases which affect an estimated 350 million people worldwide. Despite this, only 400 have licenced treatments and medical students receive little training in their diversity and care. Back for a fourth year, “The Student Voice” aims to raise awareness of rare diseases among the doctors and researchers of tomorrow, as well as giving an outlet for their experiences and thoughts on all things rare.

Thanks to our partnership with the Orphanet Journal of Rare Diseases (OJRD), our competition has really grown over the last two years. Our overall winners have had their essays published as papers, and many of the best pieces have appeared as blogs on the BMC website. Last year’s winners can still be seen on the OJRD rare disease day page, and you can learn more about all of our past winners on our general essay competition page here.

Our partnership with OJRD continues for this fourth instalment of the competition, meaning that once again our overall winner will have the chance to be published free of charge in this open access, peer-reviewed scientific publication. We are opening up the competition further still by promoting it to an international audience.

This year’s competition will also have an increased focus on patients’ and students’ experiences of rare conditions. Do you live with a rare disease yourself? Have you treated a patient with a rare disease, or conducted research into their underlying causes? Do you know of or work with a rare disease patient group? If so, this competition is for you.

If you are a medical student, biology undergraduate or masters student, or studying for a health-related undergraduate or masters degree, all you have to do to see your name in print is write a compelling 1,500 word essay on one of these three topics:

1. Rare disease patients often experience a ‘diagnostic odyssey’, moving from clinician to clinician, with multiple misdiagnoses and unnecessary tests. Discuss the impact of this experience on the patient and patient-clinician relationships and, along with examples, ideas on how this experience can be improved.

2. With reference to specific rare diseases, case studies or personal experience, discuss the barriers preventing patients from accessing treatment, and how medics and researchers can improve access to treatments and trials in the future.

3. How can more medical students and researchers become involved in rare conditions? What challenges will they need to overcome to be successful?

An expert panel of scientists, clinicians and patient groups drawn from Findacure’s extensive rare disease network will judge the essays, along with the editor of OJRD.

The winning entry for each question will receive a cash prize of £100, as well as the opportunity to attend our Rare Disease Day conference on 27th February 2018. Here they will receive their prize and meet key clinicians, researchers, patients, and pharmaceutical companies from the rare disease field.

One essay will be declared the overall winner and will receive an additional £100 as well as having their essay published in the Orphanet Journal of Rare Diseases!

Entry forms and essays must be submitted by 9.00am on Monday 20th November and emailed to Rick Thompson ([email protected]). The entry form and rules and regulations can be found at the links below.

For more information email [email protected].

Download Essay Competition Materials

Rules and Regulations

Entry Form

Essay topics

Advert – published scientist

Advert – Rare disease story

Patient Experience Open Call

Speak at our annual conference! 

On 27th February 2018, Findacure will be holding it’s fifth annual conference on drug repurposing for rare diseases. Following the success of last year, we are very pleased to repeat our Patient Experience Open Call for one of our conference’s main speaking slots. The event will be hosted at the Royal College of Nursing, in London.

We are seeking a rare disease patient and/or patient family member to share their experience of living with a rare disease, and their experience of clinical research linked to drug repurposing.

The speaker(s) will have a twenty five minute slot to speak to our mixed audience of rare disease stakeholders, including patients, patient groups, researchers, clinicians and industry representatives. Speakers will also be invited to join our panel session later in the day. This is a great opportunity to share your story and experience with the rare disease world.

If you are interested, please fill out our online application form by 10:00am Monday 20th November.

Shortlisted candidates will be contacted by the following Friday. If you have any questions,
please contact [email protected].

Early bird tickets for our 2018 conference are now on sale.