EPIRARE

The three-year EPIRARE (European Platform for Rare Disease Registries) project is co-funded by the European Commission's EU Programme of Community Action in the field of Public Health and co-funded by EURORDIS in partnership with three corporate partners

epirare

The EPIRARE project prepares the ground for creation of an EU platform for the collection of data on rare disease patients. In order to achieve this ultimate goal, the project addresses regulatory, ethical, technical and financial issues related to the development of rare disease patient registries.

Given the proven usefulness of registries to advance rare disease knowledge and treatments, there is urgent need for a common reference framework before spontaneous initiatives find independent solutions and heterogeneous legal bases, resulting in a duplication of time and resources.

EURORDIS is one of 11 partners in the project and specifically responsible for defining possible policy scenarios on the scope, common data set, governance and sustainability of rare disease patient registration. EURORDIS also contributes to the identification of patient registry initiatives and surveys the needs and expectations of patients in this area. One achievement of the project is the “EPIRARE survey” intended to explore the functioning, resources, problems, needs and expectations of existing rare disease registries in European Member States and other Countries. EPIRARE launched on 15 April, 2011 and is coordinated by the Istituto Superiore di Sanità at the Italian Ministry of Health.

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