EURORDIS and the Rare Diseases Platform

The French Minister of Health, Roselyne Bachelot-Narquin, inaugurated the new offices of the Plateforme Maladies Rares on 21 October 2010.At the end of August 2010, EURORDIS settled into newly renovated dwellings on the grounds of the Hospital Broussais with our partners in the Plateforme Maladies Rares (Rare Diseases Platform):

• Alliance Maladies Rares (French National Alliance), a French association of 200 organisations for patients' and relatives of patients affected by a rare disease -
www.alliance-maladies-rares.org
• Maladies Rares Info Services (French Rare Disease Help line), a telephone service providing personalised information on rare diseases at: 0810 63 19 20 (cost of a local call from a landline) or by email from the website - www.maladiesraresinfo.org
• Orphanet, a research division within INSERM, offering free access to the European database on rare diseases and orphan drugs - www.orphanet.fr
• GIS Institut des maladies rares (French Rare Disease Institute), a scientific interest group that coordinates and advances rare disease research - www.institutmaladiesrares.net
• L’Association Française contre les Myopathies (French Muscular Dystrophy Association) the organiser of the annual Telethon and a major actor in the field of rare diseases –
www.afm-telethon.fr

 

The Plateforme Maladies Rares, created in 2001, is unprecedented in Europe as it unites key players in the field of rare diseases under one roof: RD patient organisations (Alliance Maladies Rares, EURORDIS), RD information services (Orphanet, MRIS) and players in the field of RD research funding (GIS-Maladies Rares and the AFM).

After anticipating this move for several years, it finally became a reality mainly through the support of the AFM and funds raised through AFM’s annual telethon. In addition to allowing us to better welcome our members and partners at national and European levels, these new facilities provide an even more harmonious and collaborative work environment within the platform.

Also, for numerous patient organisations, the platform provides a space to host meetings, to meet and to share information as well as guidance and know-how. To foster these, each structure in the new platform boasts several meeting rooms (equipped with a WiFi network) with the largest seating 65 and 80 people respectively. More than 250 annual meetings are held each year on the Platform, which together total more than 6000 players in the fight against rare diseases.

Plateforme Maladies Rare
The "Platforme Maladies Rares"

The Plateforme Maladies Rares was created with five very specific objectives in mind. Firstly and foremost it serves in advancing the recognition of rare diseases as a public health priority as well as voicing patients’ concerns.

It supplies help in the creation and the undertakings of all rare disease associations through training, knowledge transfer and assistance. Via the dissemination of information, it strengthens awareness about rare diseases among diverse publics. It is deeply implicated in the sustainability and extension of rare disease research which is primordial in finding treatments. As aforementioned the platform provides a meeting and work space for all actors involved in the fight against rare diseases.

Page created: 20/10/2010
Page last updated: 05/12/2012
 
 
The voice of rare disease patients in EuropeEURORDIS Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases