Share4Rare toolkit for patient advocacy
Introduction
The Share4Rare Advocacy Toolkit is intended as a living resource for the Share4Rare community. Rather than a homogeneous field, patient advocacy is driven by the needs of the respective patient community and can for this reason span domains as diverse as communication, fundamental research, investment strategies and legal. By definition, it is nearly impossible to cover such diversity in a single person- and toolkits written by advocates for advocates are therefore of particular value to the advocacy community. The ambition of the Share4Rare advocacy toolkit is to develop a living resource that grows with the needs and interests of the Share4Rare community and that incorporates professional-grade insights, tools and methods in the areas of education, communication, research, management and strategy, together with suitable ‘how-to’ introductions and downloadable templates.
Summary
Share4Rare aims to bring rare disease communities together, educate them to become citizen scientists, and generate collective intelligence to boost rare disease research, improving the lives of those affected by them. The project granted by the EU builds and drives a research platform enabling citizen science in rare diseases, advancing rare disease research through cultivating collective intelligence. Share4Rare is a Collective Awareness Platform for Sustainability and Social Innovation (CAPSSI) addressed to the different stakeholders involved in the field of paediatric rare diseases. This document provides the Advocacy Toolkit for rare diseases conducted by the Share4Rare team. The development of the Toolkit will continue throughout the project building new materials in an ambitious effort to be a unique digital reference point for the Rare Disease Community.