International federations can also be members of Rare Diseases International.
What is a European or international federation?
A European or international Federation is a network of national patient organisations across borders for one specific rare disease or group of rare diseases.
What does a federation do?
- Create a common network and website
- Collect and share information about the disease on an international level
- Collect data across borders
- Cooperate with, network for and train medical professionals:
- Setup of common projects (like youth exchange, summer camps, workshops, consensus meetings and conferences)
- Create common standards of care, rehabilitation and treatment
- Collaborate with European Reference Networks and participate in the European Patient Advocacy Groups (ePAGs)
- Represent common interests at the European or international level
- Promote research on all aspects of the disease and participate in research projects
- Transfer knowledge, equipment, ease access to treatment and support for people with the rare disease in underdeveloped countries
- Support smaller national groups in the process of setting up an organisation
- Exchange best practice guidelines
- Collaborate with the European Medicines Agency.
The Council of European Federations (CEF)
EURORDIS created the Network of European Rare Disease Federations in 2009 to provide a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
The Network comprises 70+ European and international Federations, all members of EURORDIS.
The network is governed by the Council of European Federations (CEF).
The CEF enables European and international rare disease federations to:
– Share information and experience relevant to activities and issues they have in common across their specific rare diseases at the European level.
– Discuss and implement common activities within EURORDIS.
– Enhance or build their capacities as European federations gathering patient groups from different countries for their specific disease or group of diseases.
– Foster their voice at the European level for their respective diseases. The CEF meets once a year for a two-day workshop and communicates with EURORDIS on a regular basis via e-mail and online meetings.
Read the CEF internal rules.
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Information on past and future CEF workshops
For CEF Members only, these documents are password protected. Please contact anja.helm@eurordis.org for more information
- 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
The EURORDIS Programme of Support to European Rare Disease Federations
The aim of the EURORDIS Programme of Support to European Rare Disease Federations is to promote patient empowerment through capacity building and European networking between patient organisation representatives in disease-specific areas. The Programme also aims to enhance dialogue between these patient organisations representatives and clinicians or academic European leaders in their area.
The Programme provides small, quick and flexible financial support for the organization or participation in European meetings, training sessions, project development, workshops and conferences. All European Rare Disease Federations that are full members of EURORDIS can apply for this support.
The programme is designed to provide seed money and add-on money to enhance the own efforts of the European Federations, and not to provide significant or recurrent financial support. To find out more about how to apply for the Programme email anja.helm@eurordis.org.