EUROPLAN National Conferences

The EUROPLAN National Conferences are the tool designed to promote the adoption and implementation of national plans or strategies for rare diseases in European countries based on the Recommendation of the EU Council on an action in the field of rare diseases of 8 June 2009, as well as to facilitate the integration of EU rare disease policies and recommendations into the national health and social systems.

EUROPLAN National Conferences are jointly organised in each country by a National Alliance of rare disease patient organisations and EURORDIS.

These conferences were co-funded by the European Commission within first the EUROPLAN project (2008 – 2011) and thereafter, within the EUCERD Joint Action (2012 – 2015) and RD-ACTION (2015 – 2018).

Impact of EUROPLAN National Conferences

In 2009, only five EU Member States had adopted a national rare disease plan (Bulgaria, France, Greece, Portugal and Spain).

Between 2010 and 2018, altogether 59 EUROPLAN National Conferences took place in 25 EU Member States, as well as in Georgia, Macedonia, Russia, Serbia and Ukraine. Some National Alliances organised several EUROPLAN conferences in their country.

As a result, by the end of 2018, 25 EU Member States had put in place a national plan or strategy for rare diseases. Malta, Poland and Sweden are still discussing the adoption of a strategy or plan.

The outcomes of these conferences have undoubtedly contributed to the adoption of national plans or strategies in many European countries.

EUROPLAN National Conferences are instrumental in the creation, adoption and implementation of national rare disease plans

The strength of a EUROPLAN national conference lies in its shared philosophy and format. The conferences are:

Patient-led - they are organised by national Rare Disease Alliances in conjunction with EURORDIS.

Multi-stakeholder - national authorities, patients, carers, healthcare professionals, academia, industry, social workers, insurers all attend to exchange on their experiences and perspectives.

Integrated between European and national levels - participants use the conferences as an opportunity to assess the integration of EU regulations, policies and recommendations into national health and social systems.

Exhaustive - Discuss all strategic areas of a national plan/ strategy, including governance and also rare disease healthcare and research.

Page created: 12/02/2019
Page last updated: 13/03/2019
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases