A new network for European rare disease federations

Today 31 European rare-disease specific federations are members of EURORDIS, and more informal or emerging federations are currently involved in EURORDIS' activities. Their increasing number and importance implies better coordination.

This is why EURORDIS has decided to create a Network of European Rare Disease Federations following the model of the already-existing and highly-successful Council of National Alliances (CNA).

Family | La Famille | Familia | Família | FamilieWhile members of the CNA organise activities by country, and will be preoccupied by issues such as National Plans for Rare Diseases; the members of the Network for European Federations are organised by disease and will work on initiatives such as the European Reference Networks. Both networks are complementary and will enhance EURORDIS' outreach to local patient groups in order to build a stronger pan-European movement of people living with rare diseases.

'Although national alliances are very effective in representing rare diseases on overarching issues, the main added value of European federations is that they allow people affected by the same disease to communicate and learn from each other,' argues Rainald von Gizycki, a representative of Retina Europe. 'Moreover they can provide the critical mass needed to obtain the resources, which small and scattered national groups are unable to get.'

The Network will enable EURORDIS to play an active role in a number of priority policy areas. 'This is an opportunity to highlight our support to capacity building of policy making | l'élaboration des politiques | la formulación de políticas | decisões de política disease-specific networks and to enhance an even more collaborative work between EURORDIS and these federations on future European research networks, drug development, drug availability, web communities and information help lines', explains EURORDIS' Chief Executive Officer Yann Le Cam. 'It will also enhance our work on European Reference Networks of Centres of Expertise.'

Indeed, the creation of this network is especially timely at a moment when European Reference Networks of Centres of Expertise (ERN) are being paid particular attention by public health policy makers at the European and Member States levels. 'The first ERNs are an interesting experimental approach that will help define standards and practices,' argues François Houÿez, Health Policy Officer at EURORDIS. 'The new network for rare disease federations will serve as a forum to actively collaborate with existing and future ones'.

The Network will also be instrumental in advancing research and collaborating with European research projects. 'For many diseases, researchers are getting organised in networks at the European level but patients are not!” argues Rainald von Gizycki. 'I am sure that research networks like EVI-Geronet and EuroVisionNet would love existing cooperation to be enhanced by a strong European counterpart on the patient side.'

It is expected that this new Network will also increase EURORDIS' outreach to local patient groups in new and future EU Member States. 'Every day more and more patient groups from Bulgaria and Romania are interested in using European platforms to make their voices heard,' says Anja Helm, Manager of Relations with Patient Organisations at EURORDIS.

meeting | réunion | reunion | riunione | reunião | SitzungThe European network of Federations will be piloted by a Council made up of representatives of each disease-specific federation. The Council will hold its first meeting the day before the Annual Membership Meeting in Athens this May. This gathering will mark the official launching of the network and will be a unique opportunity for advocates of each disease at the European level to meet and start working together. 'I am delighted and enthusiastic about joining the Council,' says Rainald von Gizycki. 'I look forward to meeting other disease-specific federations in order to understand how they are organised, which sub groups of the disease they choose to include in their federations and what contacts they have already established with researchers for their disease.' At the Council's first meeting participants in the network will also be invited to participate in on-going initiatives, such as Rare Disease Day and the Rare!Together project.

'European federations have more weight than local patient groups when it comes to making the patient's voice heard in Brussels and other policy-making platforms,' explains Anja Helm. 'If on top of that they are members of a European network of federations, they will increase their chance of being heard by European institutions'. To find out which European federations are already members of EURORDIS, click here.

For more information contact: anja.helm@eurordis.org

This article was previously published in the March 2009 issue of our newsletter.

Author: Paloma Tejada
Photo credits: © EURORDIS

Page created: 19/08/2009
Page last updated: 10/12/2010
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