Rare Disease Day 2011 – "Rare but Equal"

Mar 03, 2011

The European Organization for Rare Diseases (EURORDIS), an alliance of patient organizations and individuals, celebrated its fourth Rare Disease Day on Feb. 28, 2011. With a focus this year on equality for patients suffering from rare diseases, the day aims to advocate equal access to healthcare, social services, medicines COMMA and treatments. Awareness-raising activities took place across Europe, but also in the US, Canada, China, and Japan.

Around 30 million people in the European Union suffer from a rare disease. To bring more drugs to market, the EU offers incentives to companies developing medicines for diseases that affect less than five in 10,000 people. EURORDIS CEO Yann Le Cam makes the case on the organization’s website, “…We believe that rare disease is one of the most dramatic cases of health inequality right now internationally and in Europe in particular…”

Specifically in Europe, the aim of the day was to “promote the explicit inclusion of rare diseases in the third EU public health program, which will decide policy and funding priorities for 2014–2020”, according to EURORDIS’ website.

The European Medicines Agency (EMA), which plays a crucial role in authorization of medicines for rare diseases, supported the event again this year. Indeed, the European Commission grants orphan designation to drugs based on the recommendation of the EMA's Committee for Orphan Medicinal Products. Furthermore, orphan medicines are accessed at a European level rather than in each separate member state. EMA also works closely with FDA in sharing information, and developing common procedures and submitting annual reports on the status of designated orphan medicines. EMA also works with organizations that represent patients through EURORDIS.