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Findacure: Peer Mentoring Scheme For Patient Advocacy Groups

September 29, 2014

The Orphan Druganaut Blog is honored to have the opportunity to speak to Flóra Raffai, the ­­­­­­­­­­­­­­­­­­­­­­­­­­­­Project Manager from Findacure. Findacure is a charity which focuses on fundamental diseases – rare, often genetic, diseases from which the basic mechanisms of dysfunction can be extrapolated and applied to our understanding of more common conditions.

1)  Please share with the readers how Findacure came about and its mission?

Findacure arose out of the experiences of our founder Nick Sireau trying to find a cure for the ultra-rare condition alkaptonuria – or AKU for short – that affects both of his children. As the CEO of the AKU Society, he realized the fundamental importance of patient groups in offering support to patients and as key partners in research. However, there was no real support structure in the UK to help patient groups become established as organizations and guide them in becoming involved in biomedical research, drug discovery, and clinical trials. Thus, Findacure was founded in 2012 to fill this unmet need.

We aim to follow in the footsteps of William Bateson, one of the fathers of modern genetics, who told us all to ‘treasure our exceptions’. Our mission is to build the fundamental disease community, creating stronger patient groups in order to accelerate research and develop treatments.

2)  What is the difference between a “fundamental disease” and a “rare disease”?

‘Fundamental diseases’ is a new term coined by Findacure to emphasis the importance of rare diseases, not just for people affected and impacted by them, but for the health of us all. As explained in a previous blog post, rare diseases often provide a gateway through which both human physiology and more common conditions have been better understood. An example we like to quote is that of statins, a drug used to treat high LDL cholesterol in order to avoid cardiovascular disease. However, it was only through the study of the rare homozygous familial hypercholesterolemia that the role of LDL cholesterol in cardiovascular disease was first proved, opening the way for treatments to be developed. Another example is AKU, which is a model for osteoarthritis (OA). A recent breakthrough into OA bone development was achieved through the study of bone tissue donated by AKU patients.

We believed this relationship between the rare and the common needed to be encapsulated in a new term in order to better raise awareness about the importance of rare conditions among the public, political, and scientific community. We intend this new term to lead to increased funding and research into fundamental diseases.

3)  What are some of the programs that you offer for empowering patient groups?

Our main empowerment program aims to develop the skills and expertise of patient groups through a series of training workshops. Throughout 2014, we ran four workshops on the topics of fundraising on a budget, applying to the European Commission for funding research, developing clinical trials, and good governance. Summaries of the workshops and slides can be found here.

Next to this, we offer one-to-one mentoring to small groups, providing them support in overcoming hurdles with supporting patients and developing research. Additionally, we are currently writing a book with a number of organizations and experts in the field of fundamental diseases to provide a practical guide to patient groups to help them tackle the issues they will face in developing treatments, from starting up a charity, to engaging with industry, to raising finance. This book should be published and available in 2015.

4)  On your website, there is a mention about a special upcoming project, “Peer Mentoring Scheme” in the UK. Can you share with us what this special project is and the purpose?

This is an exciting new project at Findacure, formalizing our individual mentoring into a formal program. This project aims to identify struggling or small patient groups looking to improve their capacity supporting patients and increase their involvement in research into their neglected conditions. These groups will be brought together with experts in the fundamental disease field, who have the expertise to mentor the small patient groups in achieving their goals over the year-long scheme. Through this pairing, we aim to strengthen the links between stakeholders and create a unified and collaborative fundamental disease community.

5)  If one is interested in participating in the “Peer Mentoring Scheme”, how does one get involved?

If someone is interested in participating in the Peer Mentoring Scheme, then they should follow this link to find out more information about the structure of the project, and to download either a mentor or mentee application form. We are accepting applications until 31st October, after which we will select the twenty most compatible mentors and mentees pairs for this initial pilot. Following this, there will be a speed-networking event in November for participants to identify who they would like to work with for the year-long project.

 6)  What do you see for the future of patient advocacy and your “Peer Mentoring Scheme”? 

I see rare disease patient advocacy increasing in importance over time. As representatives of the patient voice, these groups will be recognized by governments and researchers as crucial partners in developing policy and biomedical research. I believe collaboration is the way to achieving this future. Rare diseases need to replicate the success of the ‘Cancer’ movement that managed to unite hundreds of different conditions under one unified banner to raise public awareness about their fundamental importance to the health of everyone.

In terms of the future of the Peer Mentoring Scheme, following the successful completion of this pilot, I aim for it to be opened up as an ongoing program that matched patient groups to expert groups to grow the fundamental disease community and accelerate the development of small groups.

Logo courtesy of Findacure.

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