Capacity building patient organisations

At People Dialogue and Change we have been doing an increasing amount of work to support Patient Representative organisation to train and support a generation of young patient activists. As well as our long standing work with the European Patient Forum, where we we have been supporting the Summer Training for Young Patient Advocates programme for over three years, PDC has recently begun supporting the International Bureau for Epilepsy and the European Platform on Multiple Sclerosis. We have been working with all of these organisation to develop the leadership and advocacy skills of the young people in their ranks, and ensure that young people can be fully part of the patient advocacy movement.

It is now widely established that young people are less engaged with formal representative structures than in previous generations. Some in the youth sector have responded by re-focusing projects on so called alternative forms of participation such as social movements or deliberative democracy.  However, our work with the patient representative community highlights that alongside this there is still need for a continuous focus on involving young people in representative civil society structures. For people, with long term health conditions these structures provide a vital way of promoting and advocating for patients rights, and raising awareness of specific issues affecting communities of people that are relatively small and spread out.