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International Rare Disease Day: The patients’ voice

26 Feb 2016 | By Inserm (Newsroom) | International

On the 9th International Rare Disease Day, which will be held on 29 February next, many events will be organised in over 80 countries to raise awareness among the general public, health professionals and politicians about the characteristics of these diseases, their impacts and the means to manage and treat them.


This year, the campaign initiated by EURORDIS revolves around the theme of “Patient Voice,” in order to highlight the crucial role of patients, who by expressing their needs, encourage the necessary changes, and help to improve the daily lives of patients and their families.

Rare diseases are extremely diverse (neuromuscular, metabolic, infectious and autoimmune diseases, rare cancers), and are often serious and chronic. Although each of these diseases affects a limited number of people (fewer than one in 2,000 people), there are, however, 6,000–8,000 rare diseases. Nearly 3 million people in France, and nearly 30 million in Europe are thus affected by rare diseases.

Orphanet, a reference portal on rare diseases coordinated by Inserm, and a member of the Rare Disease Platform, offers open access to many services in order to enable patients to understand their disease and its consequences, to guide them through the care pathway, especially by identifying diagnostic laboratories and centres of reference, and to help them break out of their isolation by facilitating access to patient associations.

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