Aims of Rare!Together

Rare Together! is a project that from 2008 to 2011 supported 3 networks to help them build their European Federation. The information acquired during the course of the project is still available to raretogether.eurordis.org

For more information about the creation and management of European Federations for Rare Diseases, please contact anja.helm@eurordis.org.

With the Rare!Together project, Eurordis plans over a 3 year period:
a.    To help in the creation, operation and management of European Federations, via a mentoring project, face to face meetings and workshops
b.    To develop and implement the Rare Together website to share information, experiences and best practices across Europe, with close implication of the Council of European Federations
c.    To develop a “Guide to Establishing and Developing a European Rare Disease Federation”. This Guide will be a good practices reference and a tool kit to reach out to patient organisations who want to set up a European Federation, as well as to already existing European Federations.

This Guide will be a good practices reference handbook and a tool kit reaching out to patient organisations planning to set up their European Federation, as well as to existing European Federations.

The ultimate objective of Rare!Together will be the empowerment of patient groups through information, training, close mentoring, networking, and exchange of experience and good practices.

We have selected two networks to start:

Rationale of the project

Rare Disease Patient Groups in Europe face obstacles to carrying out effective work because the rarity of the disease they support means that they can often only represent small numbers of patients in one country. Networking on the national level, while vital, must be complemented with international networking. Many patient organisations have contacted Eurordis over time asking us for help in the creation of a European Network/Federation for their disease. Their questions and problems are manifold, ranging from the status of the future organisation (charity, association, foundation…), to the country where best to establish the organisation, from how to raise funds for a European organisation to how to tackle the language problem, etc. Eurordis is very keen to support the establishment of European disease-specific Federations, as their work can greatly improve the life of patients by uniting forces, sharing knowledge and experience, fostering European research projects, raising awareness, etc. European Rare Disease Federations can also speak with one voice for their disease at EU level and in specific institutions, such as the EMEA, the European Medicines Agency. There is also a need to range and systematise success stories and make them available to those patient organisations willing to embark in the creation of a European Federation.

Background to the Rare!Together Project.

Improving the capacity of Rare Disease Patient Organisations to build and operate European disease-specific Federations.
Rare Disease Patient Groups in Europe face obstacles in carrying out effective work because the rarity of the disease they support means that they represent small numbers of patients in any one country. Networking on the national level, while vital, needs to be complemented with international networking.

Many patient organisations have contacted Eurordis asking for help in the creation of a European Network/Federation for their disease. Their questions and problems are manifold, ranging from the status of the future organisation (charity, association, foundation…), to the country where best to establish the organisation, from how to raise funds for a European organisation to how to tackle the language problem, etc.

Eurordis is very keen to support the establishment of European disease-specific Federations, as their work can greatly improve the life of patients by uniting forces, sharing knowledge and experience, fostering European research projects, raising awareness, etc.

European Rare Disease Federations can also speak with one voice for their disease at the EU level and in specific institutions, such as the EMEA, the European Medicines Agency.
There is also a need to archive success stories and make them available to other patient organisations who are considering embarking on the creation of a European Federation.

One Response to Aims of Rare!Together

  1. fragility says:

    Dear Sylvie,
    bon courage!!
    I am the actual president of OIFE, a European Federation for “osteogenesis imperfecta” (brittle bone disease) and we started in 1993 and now have 24 members.

    I am on the steering committee of Raretogether, so feel free to ask anything you do not find here and I will try to reply!

    Ute Wallentin
    president@oife.org

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