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Health & Consumer Voice - March - 2011 Edition

Rare Disease Day 2011: focus on health inequalities

The last day of February is the International Rare Disease Day. 28 February 2011 marked the fourth edition of the event. This is an awareness-raising event coordinated by EURORDIS, the European Organisation for Rare Diseases, at international level and by national alliances of patient organisations at national level. On this occasion, hundreds of patient organisations from more than 40 countries worldwide organised awareness-raising activities and converged around the slogan “Rare but Equal”.

Patient groups and their partners, coordinated by national alliances at country level, planned a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities were carried out across Europe, in Russia, Georgia and Armenia, as well as in the US, Canada, Australia, New Zealand, China and Japan. Furthermore, a book entitled “The voice of 12.000 patients” and several videos were made available on the website of the event.

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 citizens. It is estimated that there are 6000 to 8000 rare diseases in the world today, 75% affecting children.

The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality.

Paola Testori Coggi, European Commission’s Director-General for Health and Consumers said: “I would like to express my wholehearted support for World Rare Diseases Day. It is vital that we continue to raise awareness of the difficulties faced by those affected. Even though only around 7% of Europeans suffer from a rare disease, this translates to around 36 million people. Rare diseases are a prime example of where working at European level can prove to be immensely beneficial. A Eurobarometer survey published to mark World Rare Diseases Day illustrates that most Europeans agree”.

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