21 Jun 2012

Getting help

Illustration for article: Getting help
When you suffer from a rare disease, one of its worst effects is that you feel isolated, without receiving any useful information. Today, several structures on a European scale provide help and information to people with a rare pathology.


Alliance maladies rares

The Alliance Maladies Rares includes 200 French patient associations. It is a place for information, training and mutual assistance, where friendship, discussion and sharing experiences play an essential part. The Alliance Maladies Rares is a recognised national representative, capable of handling requests from patient associations and those of isolated "orphan" disease associations, and acts as an interface with public authorities capable of influencing the relevant policies. The Alliance is supported by AFM-Téléthon. 


Eurordis is a federation of 400 rare disease associations in 42 different European countries, and covers more than 1,000 diseases. It consequently represents 30 million people affected by rare diseases. It is dedicated to improving the quality of life of all those who live with a rare disease in Europe. AFM-Téléthon helps to finance it. 

The European Network of telephone helplines for rare diseases

This network was created as part of the Rapsody project, a EURORDIS initiative financed by the European Commission. Rapsody lasted two years and brought together different European partners in a joint discussion: how to meet the needs of patients suffering from rare diseases? AFM-Téléthon was involved in coordinating the project, but above all it occupies a key position in the group, working on setting up this European network of telephone helplines for rare diseases.
A directory of telephone helplines and a set of tools for mutual aid and assistance for newly introduced services has been implemented. The Network organises training in using these tools for patient associations wishing to set up a new telephone helpline.