The Council of European Rare Disease Federations provides a platform for exchanging experience and information across federations working for specific diseases or group of diseases.

The Council enables European Rare Disease Federations to:

• Share at the European level information and experience relevant to common activities and issues concerning specific rare diseases,
• Discuss and implement common activities within EURORDIS,
• Enhance or build capacities as European federations to gather patient groups from different countries for specific diseases or group of diseases,
• Foster a voice at the European level for respective diseases,
• Directly or indirectly reduce the impact on the lives of those living with the rare diseases addressed by European federations.

Specific Objectives:

• Workshop 1- Athens, Greece
  7 May 2009
  
• Workshop 2 - Brussels, Belgium
  3 December 2009
  
• Workshop 3 - Paris, France
  1-2 July 2010
  
• Workshop 4 - Paris, France
  30 June - 1 July 2011
  

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

In itself, the Council of European Rare Disease Federations provides a platform for exchanging experience and information across federations working for different diseases or group of diseases. It functions as a link between EURORDIS and members of the federations aiming to foster synergies and empower members.

2. To participate in the annual international Rare Disease Day

Each European federation is invited to participate in Rare Disease Day, customising the theme and focus to its specific disease (s). Likewise, all members of the European Network of RD European Federations are invited to join forces with EURORDIS’ Brussels activities on Rare Disease Day.

3. To take part in the project Rare!Together

The project Rare!Together was initiated in 2008 by EURORDIS, under the auspices of Medtronic Foundation and DG SanCo through the Operating Grant OPERA, in order to support the development of fledgling European networks of rare disease patient organisations. The project is also elaborating a knowledge base, developed on raretogether.eurordis.org, to be used by 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 Rare Disease Federations provides a forum allowing active collaboration between existing and prospective 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 experiences about these collaborations with ERNs
• Initiate new applications for ERNs or partnership in application for ERNs
• Develop common tools destined to enhance collaboration between ERNs and European Rare Disease Federations; such as annual meetings of the European patient group networks in conjunction with the ERN meetings; capacity building of patient advocates in patient databases and registries, in clinical trials and drug development, in EU regulatory affairs, in research activities, in information activities, in the development of social guidelines, in respite care services, and in therapeutic recreation programmes,
• Develop common tools to involve patients and families as active users of European Reference Networks and of Centres of Expertise; such as online patient communities, European helplines, patient and family leaflets, and evaluation by patients.




5. To promote and collaborate with European research projects

The Network of European Rare Disease Federations provides a forum to:

• Promote patient centred rare disease research priorities,
• Communicate information about rare disease research priorities and instruments,
• Exchange information on developing and managing research projects or on partnering research projects
• Identify and promulgate best practices in order to empower patients' capacities as active players thus bridging the gap between research and patients.