Rare Diseases Alliance

Introduction

The Rare Diseases Alliance, an officially recognised non-profit organisation, was created on 24 february 2000 and brings together more than 200 associations of patients. It represents almost 2 million patients and about 2000 pathologies ; it also welcomes isolated patients and families whose illnesses fall outside of the scope of associations.

Missions

The Alliance has defined its missions as follows :

• making rare diseases known to the public, authorities and health professionnals. In order to do so, it informs on the scientific, sanitary and social challenges posed by rare diseases. It promotes the coverage of the issue in the press, on TV and on the radio. It also contributes to the information of doctors.
• improving the quality of life and life expectancy of persons affected by rare diseases, by contributing to better access to information, diagnosis, care, rights, coverage and insertion.
• helping the associations of patients: the Alliance organises at regular intervals information meetings for its members, training sessions for persons in charge in the associations, thematic forums open to all associations ; it also provides accompanying documents and personalised advice... It is empowered to make proposals on topics of common interest, such as early diagnosis, social rights, multiple impairement, medicinal drugs... The Alliance can offer a welcome, resources and mutual assistance, because its mode of operation is essentially based on conviviality , exchange and sharing of experiences .
• promoting research in order to boost hopes for recovery. For this reason, it informs the associations on the progress of research, lobbies public authorities for the funding of research on rare diseases (the Alliance is a Founding member of the Rare Diseases Foundation), stimulates the pharmaceutical industry to devote funds to research.

Finally, the Alliance has asserted itself as a national advocate capable of influencing policies on rare diseases. It is strongly involved in the preparation and follow up of the National Plan on Rare Diseases.

Because of its contacts in the regions, the Alliance is able to take note of the expectations and needs of patients and families by operating close to their homes.

Actions and services

In order to carry out its missions, the Alliance implements a number of high-visibility initiatives to provide information on the rare diseases, to share knowledge and increase the visibility of the issue:

• The Rare Diseases March
  The Alliance organises every year in Paris the « Rare Diseases march », as part of the Telethon initiative. More than 2000 walkers, patients, parents, children, relatives, friends and neighbours, united for a common cause, march through Paris in the hope of drawing attention to the rare diseases and to the many persons affected by them.
• Information symposia
  At regular intervals, the Alliance organises conference and discussion days centered on various topics, with speakers from associations and external experts (researchers, lawyers, doctors, civil servants ...). These symposia are precious sources of information for associations, patients and all other stakeholders involved in activities dealing with health. They are open to the public in general and provide opportunities to enhance the visibility of rare diseases. They take place all over the year in Paris and in the provinces as well.
• The international day of rare diseases
  Every year, on february 28th, the Alliance acts as the organiser for France of the international Day of rare diseases. The Day is an outstanding opportunity to focus attention on these diseases. Many events are organised on this occasion, both on a national and regional scale.
• Issuing information and awareness supports
  The Alliance produces continuously a number of supports to promote awareness of the rare diseases. These supports are adapted to a variety of targets : the general public, doctors, journalists, civil servants, patients...:
• A flyer for the public,
• An awareness kit for schools,
• A book of testimonies : « They testify on rare diseases »,
• A guidebook on the coverage of rare diseases