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At Findacure, we believe patient groups are vital partners in addressing the challenges posed by rare diseases; they offer crucial support to individual patients and represent the patient voice in research. As a result, one of our main aims as a charity is to empower patient groups to achieve their goals.

Over the past year, we have been piloting a new programme to do just that: a peer mentoring scheme. Back in late 2014, we recruited 16 patient group mentees and 15 mentors from patient groups, biotech companies, pharmaceutical companies, media consultancies, and policy specialists. These pairs have been working to either build the capacity of the mentee’s organisation, improve their patient support services, and/or increase their links with research.

Amazing progress has been made over 2015, and on Monday, we marked the official end of the pilot with an afternoon reception at the Royal Institution in London. To celebrate the achievements of the pairs, we had 9 presentations from mentees sharing their stories. It was incredible to hear the variety of outcomes between mentoring pairs: from those who used the programme to help them establish the building blocks of new charities, to those who looked to support vital clinical trials into their conditions, to long-running charities who needed to review how they engaged with their members. Videos from all the presentations are available here.

We would like to thank everyone who participated in the afternoon reception and in the whole programme, it has been wonderful to work closely with you all. Well done to everyone for the wonderful progress made!

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