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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases