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.


Specific Objectives:

 

1.  To create and develop the Council of European Rare Disease (RD) European Federations

 
The Council of European RD Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The Council of European RD Federations is a link between EURORDIS and the members of the Federations. It will look for synergies to help empower the members.
 

2. To participate in the annual international Rare Disease Day

Each European Federation will be invited to participate in the implementation of Rare Disease Day. The theme and focus can be customized to promote the needs of each specific disease(s).
All members of the European Network of RD European Federations will be invited to join forces with EURORDIS in its activities in Brussels for Rare Disease Day.


3. To take part in the project Rare!Together

 

The project Rare!Together has been initiated in 2008 by EURORDIS, with the support of Medtronic Foundation and DG Sanco through the Operating Grant OPERA, in order to support the development of new and fledging European rare disease federations of patient groups. The project is also developing a knowledge base, developed on RareTogether, useful to all networks and federations.

4. To promote and collaborate with European Reference Networks of Centres of Expertise for Rare Diseases (ERN)

The Council of European RD Federations will provide a forum to actively collaborate with existing and future European Reference Networks of Centres of Expertise for Rare Diseases. Within the Council, European Federations can:

  • Use the Declaration to promote the need for ERNs for each of their diseases or group of diseases
  • Exchange information and experience these collaborations with ERNs
  • Initiate new applications for ERNs or partnership in application for ERNs
  • Develop common tools to enhance the collaboration between ERNs and European RD Federations: annual meetings of the European patient group networks in conjunction with the ERN meetings; capacity building of patient advocates in patient databases & registries, in clinical trials & drug development & EU regulatory affairs, in research activities, in information activities; development of social guidelines; respite care services; therapeutic recreation programmes; etc
  • Develop common tools to enhance the communication and involvement and patients and families as active users of the ERNs and of the CoE: web online patient communities; European helpline; patients & parents leaflets; evaluation by  patients; etc

 

5. To promote and collaborate with European research projects

 
The Network of RD European Federations will provide a forum to:

  • Promote patient centered rare disease research priorities
  • Disseminate information about rare disease research priorities and instruments
  • Exchange information on developing and managing research project or about partnering in research projects
  • Identify best practices and disseminate them to bridge the gap between research and patients and empower their capacities to be active players

 

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 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

 

Page created: 20/09/2012
Page last updated: 06/09/2017
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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