Public Consultation On Rare Diseases Yields More Than 600 Contributions, Reports The European Commission

Main Category: Public Health
Article Date: 08 Mar 2008 - 1:00 PDT

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The European Commission announced this had been a record response to a public consultation on health. The announcement was made at the first Public Hearing on Rare Diseases ever to be held at the European Parliament, which took place in Brussels on March 4th.

Nick Fahy, from the European Commission's Health and Consumer Protection Directorate, said a new version of the Communication on Rare Diseases would follow. This Communication would take into account feedback from the Consultation. The Communication and a set of recommendations will be presented to the Council of Ministers and to the European Parliament in June, and voted on in late November 2008.

The Public Hearing on Rare Diseases was co-hosted by Eurordis and Members of the European Parliament, Frédérique Ries and Jules Maaten. This was also an occasion to discuss rare diseases as a public health priority and hear Manuel Hallen, acting Director of the Commission's Research Directorate, describe the latest funding opportunities for rare disease research.

Terkel Andersen, President of Eurordis, explained why rare diseases should be a public health priority and how they can benefit from European-wide coordination of policies and funding. He also defended the idea of a European Agency for Rare Diseases in order to fulfil this objective.

Lesley Greene, former president of Eurordis and founder of CLIMB UK, closed the event with an emotional testimony of her daughter's long-battle against the metabolic disease Cystinosis. Ms. Greene made a compelling call for policy-makers to "listen to the patient", while describing her experience with a health system that often fails to respond adequately to this type of complex, chronic and debilitating condition.

The Public Hearing is the latest milestone in the series of events organised by Eurordis and hundreds of patient organisations around the Rare Disease Day, celebrated for the first time on February 29th, 2008.

For more information, visit: http://www.rarediseaseday.org

Rare Diseases

A disease is considered rare when it affects less than one in 2000 people. In a total population of 459 million citizens (EU) this could mean as many as 230,000 individuals for each rare disease. Most rare diseases do only affect some thousands, hundreds or even a couple of dozens patients. These "very rare diseases" make patients and their families particularly isolated and vulnerable. It is worth noting that most cancers, including all cancers affecting children, are rare diseases.

There are about 7 000 different rare diseases. Overall 25 million people are or will be affected by a rare disease in the European Union. Because they are rare, the existing information is insufficient; diagnosis is not easy: some patients have to wait more than 20 years to have the right diagnosis.

Eurordis

The European Organisation for Rare Diseases (EURORDIS) represents more than 300 rare disease organisations in 34 different countries, covering more than 1,000 rare diseases. It is therefore the voice of the 30 million patients affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, and corporate foundations and the health industry.

Eurordis