Past Projects: Paving the Way to Self Management

Families with rare conditions discuss how they self manage their condition

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The Paving the Way project is a nine month project based in Scotland that will produce a series of pod and vodcasts of families with rare conditions discussing how they self manage their condition. The videos were launched on 24th May 2011 and are available for you to see here.

It will produce a resource that will challenge negative attitudes about people with rare, long term conditions and encourage both people with rare conditions and healthcare professionals to understand and embrace a person-centred, empowering approach to self management.

Over the course of the next 9 months we will be interviewing up to 10 people to discuss how they manage their rare condition. These pod and vodcasts will be freely available on our website, along with the transcripts and we will be disseminating them as an educational resource to health professionals and through our patient networks too. The self-management videos are available here.

We hope that the interviews will give practical tips and strategies that will help others to overcome barriers . We will also produce a written evaluation of this approach to supporting self management and make recommendations for its future use and wider potential.