Rare!Together
A new project promoting European disease-specific federations
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Rare! Together is specifically targeted at existing patient organisation networks that have already established a first, informal set of contacts at European level and that have proved leadership capacities. The idea is to help turn loosely-tied networks of people interested by the same disease into well-structured organisations with an impact at the European level.
'I am delighted that we will get support to establish the umbrella organisation,' says Hermine Nock, patient representative at ECHDO. 'There have been several, internal, unofficial meetings of the “core group” in the last 4 years. We organised two meetings for all European organisations for congenital heart diseases in Berlin in 2007 and in Bruges earlier this year. However we need support with legal and organisational questions such as where to base ECHDO, what to think about when drafting the statutes, and how to define membership.'
Promoting European disease-specific federations
The project is built around the concept of 'mentoring'. Emerging networks often express the need to receive tips and advise from people who have gone through the same process. For this purpose, a mentor has been hired for the project. This person has extensive experience setting up and running patient organisations. He will be responsible for drafting the Guide and moderating the mailing list. Mailing lists and wikis are web tools that will be used to exchange information amongst members of the supported network, in order to facilitate group collaboration and co-authorship in writing the Guide. The groups within the selected networks will meet each other in two workshops organised by the project. Network members will also have the opportunity to attend face-to-face meetings with the mentor and benefit from long-distance mentoring via the phone, email and the mailing list. In addition, the mentor will be able get support from a Steering Committee made out of three existing disease-specific European federations. Occasionally, the mentor might contact external consultants to answer specific queries from the project beneficiaries. External consultants may give advice on European advocacy, media work, legal and financial issues and any other specific topic of interest.
Eurordis' experience with patient organisations all over Europe has resulted in a list of frequently asked questions by those who are trying to set up a federation. Based on this experience, Rare!Together will seek to fill in recurrent gaps in terms of governance, financial and administrative management, membership and resource development. Moreover, the project is expected to help patient groups advocate at European level, work with European institutions and research platforms, as well as answer calls for proposals from the European Commission. Other possible mentoring sessions will seek to address language issues and information dissemination, through websites, mailing lists, blogs and newsletters. 'This project is especially exciting because it will allow small patient groups to become stronger through liaising with other European organisations,' explains Anja Helm, Manager of Relations with Patient Organisations at Eurordis. 'European federations have more weight when it comes to making the patient's voice heard in Brussels and other policy-making platforms.' In addition to strengthening advocacy capacities, Rare! Together is also meant to enable same-disease patient groups to share knowledge and experiences, and exchange examples of best practice. Participants will learn to work together to improve care and treatment, provide information about research studies within Europe and share results and experiences with other patients and researchers.
'More specifically, we expect Rare!Together to help us ensure safety of drugs, especially regarding off-label-use. As well as lobby for European standards on medical and psychosocial care of CHD patients,' says Herminia Nock. For Rudolf Kleinsorge from HSPSG, the project is especially interesting because it will allow patient groups to raise awareness at the European level, and therefore have a stronger impact in terms of publicity for their disease, access to financial support and be able to influence European policy. 'I think Rare! Together will be a necessary step towards a better future of European self-help groups,' says Rudolf Kleinsorge. 'It will be helpful to minimise the boundaries and to maximise the results of our work with rare diseases.'Visit the Rare!Together website: raretogether.eurordis.org
At the end of the project, at least two new federations will be created and it is expected that many more will follow and that existing ones will be strengthened. For more information contact Anja Helm, Manager of Relations with Patient Organisations, at anja.helm@eurordis.org
This article was previously published in the June 2008 issue of our newsletter.
Author: Paloma Tejada
Photos: meeting, ECRD 2007 © Gouraud/Eurordis; ECHDO © ECHDO; HSPSG © HSPSG
