RARE-Bestpractices meeting

RARE-Bestpractices, a four year project funded by the European Union Seventh Framework Programme (2013-2016), brings together a team of high level experts in the areas of clinical practice guidelines, systematic review, health technology assessment, health policy, rare disease epidemiology and public health, to develop a sustainable networking platform for sharing best practices for the management of rare diseases. EURORDIS acts as a transversal partner in the RARE-Bestpractices project, ensuring the involvement and capacity-building of patient organisations across Europe. EURORDIS is specifically involved in the creation of methodological quality standards for developing best practice guidelines on rare diseases and in the development of a pilot best practice guideline based on such standards, ensuring the involvement of patients and their families in the elaboration process.

EURORDIS is also working on the creation of the patient version of the pilot guideline and on the management of training activities organised to support stakeholders in developing and evaluating guidelines for rare diseases. EURORDIS works with patient organisations on capacity building emphasising the benefits of best practice guidelines via the dissemination of information and education of patient advocates. By improving the clinical management of rare diseases, RARE-Bestpractices will better health outcomes and quality of life for patients and reduce inequality in rare disease care.

Page created: 23/07/2013
Page last updated: 06/11/2014
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases