Our peer mentoring programme is a unique opportunity for rare disease advocates to access expertise tailored to their individual group needs, and for mentors to develop their management and leadership qualities.
We launched a pilot mentoring programme in 2014. Its aim was to support small or struggling patient groups to improve their patient support and further their involvement in research into their overlooked conditions. Following the success of this pilot, we opened up the peer mentoring programme to run on an annual basis. We recruited 18 pairs for our 2016-2017 cohort.
Mentors and mentees are shortlisted to take part in the year-long partnership according to corresponding skills/needs, and then invited to an initial ‘speed dating’ style session to ensure compatibility between the two parties. We then facilitate meetings between mentors and patient groups. The first meetings set the objectives and milestones they would like to achieve throughout the year. The pair also have a schedule of monthly calls, and quarterly meetings with Findacure, to discuss issues and measure progress. Two further networking lunches each year allow mentoring pairs to present their progress and share learnings with the rest of the cohort. All meetings take place in London, due to its relatively easy access from most areas of the UK.
Mentoring offers impartial advice and encouragement to patient groups. Outcomes include development of new or existing projects, increased access to new networks, and improved self-confidence in taking on new challenges, however, the benefits are not only for mentees. It can also have a profound impact on the mentor’s career development, exposing them to fresh perspectives, and increasing their appreciation of the rare disease field.