European Rare Disease Federations

European Disease specific Federations

What is a European Federation?
 

A European Federation is a network of national patient organization for a specific rare disease.

What can a European Federation do?

  • Facilitate contact between people from different countries and various cultural backgrounds who suffer from the same disease

          o learning from each other – for daily living and other issues
          o giving advice and support
          o making friends

  • Collect and publish information about the disease on an international level
  • Collect data (addresses, information on different structures or procedures of national organizations etc.)
  • Create a common website + networking – “together we’re strong”!
  • Cooperate with, network for and train medical professionals: Patient networks are able to enhance the cooperation of groups of professionals who are not used to working together
  • Setup of common projects (like youth exchange, summer camps, workshops, consensus meetings and conferences)
  • Create common standards of care, rehabilitation and treatment
  • Build or create Centers of expertise – on a national or European level (Networks of Centres of Expertise)
  • Represent politically common interests on European (or international) level
  • Promote research on all aspects of the disease
  • Transfer knowledge, equipment, ease access to treatment and support for people with the rare disease in poorly developed countries
  • Support smaller national groups in the process of setting up an organisation
  • Exchange “best practice examples” and guidelines for certain procedures (how to do public relations, fundraising, organize a conference, ….)
  • Collaborate with the European Medecines Agency, which only involves European federations

 

European and International Federations currently members of EURORDIS


Council of European Rare Disease Federations

The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.

The Council enables European RD Federations:

  • to share information and experience relevant to activities and issues they have in common across their specific  rare diseases at the European level,
  • to discuss and implement common activities within EURORDIS,
  • to enhance or build their capacities as European Federations gathering patient groups from different countries for their specific disease or group of diseases,
  • to foster their voice at the European level for their respective diseases,
  • in order to –directly or indirectly- fight against the impact on the lives of people living with the rare diseases these European federations are specifically addressing.

 

Take a look at our CEF Resources

 

Informations on past and future workshops

For CEF Members only, these documents are password protected. Please contact anja.helm@eurordis.org for more information

Workshop 14, 9-10 November 2021, online

Workshop 13, 26-27 November 2020, online

Workshop 12 - Brussels, Belgium, 8 November 2019

Workshop 11- Paris, France, 11-12 December 2018

Workshop 10- Paris, France, 26-27 October 2017

Workshop 9- Paris, France 3-4 November 2016

Workshop 8 - Paris, France 28-29 October 2015

Workshop 7 - Paris, France 14-15 October 2014

Workshop 6 - Paris, France 29-30 October 2013

Workshop 5 - Paris, France 30-31 October 2012

Workshop 4 - Paris, France 30 June - 1 July 2011

Workshop 3 - Paris, France 1-2 July 2010

Workshop 2 - Brussels, Belgium 3 December 2009

Workshop 1- Athens, Greece 7 May 2009

 

Support to European Federations

Support to EF Terms & conditions

Application form 2020

 

Page created: 20/09/2012
Page last updated: 15/11/2021
 
 
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