EUROPLAN II: Working towards national policies for rare diseases in all EU countries by 2013

Europlan

Actions to support the implementation of national plans or strategies for Rare Diseases are back on the agenda with EUROPLAN II – the continuation of an EC-funded project to provide national health authorities with tools for the development of national strategies following the European Council Recommendation on an Action in the field of Rare Diseases.

EURORDIS and its National Alliances have spearheaded this process and act as catalysers in the development and viability of National Plans. EURORDIS worked with 15 National Alliances in EUROPLAN I (2008-2011) and is collaborating with 24 Alliances or national patient groups in EUROPLAN II in order to facilitate the organisation of national conferences aimed at promoting key measures and fostering the dialogue amongst relevant stakeholders.

As part of EUROPLAN II, 23 conferences will take place in 19 EU countries and 4 non-EU countries: Belgium, Croatia, Cyprus, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Luxembourg, Netherlands, Poland, Portugal, Romania ,Slovakia, Spain, Sweden, United Kingdom, Georgia, Russia, Serbia and Ukraine.

The conferences are the cornerstone of this project as they aim to promote the implementation of a national policy for rare diseases, adapted to each country’s specific needs while integrating European policies in their national system. In order to fulfil this objective, EURORDIS relies on 10 patient representatives who act as Advisors to the National Alliances in charge of organising the conferences. The Advisors will ensure that a common methodology is used and that all conferences follow the same format and touch on all the relevant topics.  The conferences, which are patient led, must ensure the participation of all the stakeholders needed to implement the right policies.

A EUROPLAN II inception workshop was organised on 10-11 September in Rome by Prof. Taruscio, of the Italian Institute for Health, leader of EUROPLAN II. It was attended by health authorities from EU Member States as well as from Armenia, Georgia and Norway (altogether 27 countries). The meeting aimed to develop common suggestions for specific activities in support of national planning.

More information:

http://www.eurordis.org/europlan-support
www.europlanproject.eu

Page created: 17/09/2012
Page last updated: 25/03/2019
 
 
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