Share4Rare toolkit for patient advocacy
European community advisory boards
The European Community Advisory Boards (ECAB) idea came from the European Aids Treatment Group (EATG) as a way to promote the harmonization of the best available clinical practices, standards of care and access to the latest and best available therapies and diagnostic tools throughout Europe. By identifying and training patients and advocates for a high-level scientific platform, representing the perspective of the disease community that brings together civil society, scientific researchers, the pharmaceutical industry and occasionally international institutions to address key science issues.
Eurordis EUROCAB Initiative for rare diseases
The EURORDIS Community Advisory Board (CAB) Programme assists patient organisations in setting up and structuring a Community Advisory Board for their disease area. Depending on the administrative capabilities of your Network, EURORDIS can help in distinct ways to get a CAB going.
The EURORDIS EUROCAB Programme includes some common principles and tools for patient groups and sponsors: capacity building of patient advocates, peer-to-peer exchange of experiences across CABs, quality monitoring of the process and outputs of CABs, transparency and prevention of competing interests, promotion of the programme, and evaluation and possible eventual scientific publication.