February 29th Is The First Rare Disease Day

Main Category: Public Health
Article Date: 28 Feb 2008 - 1:00 PDT

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February 29th 2008 is the First Rare Disease Day in Europe and beyond. This is the first time patient groups from different countries and representing a variety of diseases are collaborating on a large-scale awareness-raising campaign in favour of rare diseases.

In most European countries and in Canada, people concerned by rare diseases will be writing to their local representatives, holding press conferences, organising walks, putting together discussion forums or fundraising events in order to raise awareness about the needs of people living with rare diseases today.

Feedback from the activities undertaken in all participating countries will be presented during a Public Hearing at the European Parliament in Brussels on March 4th. The Public Hearing on Rare Diseases, which is co-hosted by Eurordis and MEPs Frédérique Ries and Jules Maaten, will present the issue of rare diseases as a public health priority and will focus on the outcome of the Public Consultation on the Commission Communication on Rare Diseases and the promotion of national plans for rare diseases.

This first Rare Disease Day is organised through Eurordis' Council of National Alliances. 15 national alliances from Belgium, Bulgaria, Canada, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Netherlands, Romania, Spain and Sweden and patient organisations from UK, Portugal and Finland are acting as organisers. Some countries, such as Denmark and Sweden, have the patronage of their royal princesses and others (Germany, Italy, Hungary and Greece) have secured the active support of their First Ladies. Many more patient representatives and other stakeholders from as far as Russia and Ukraine, will join them to make this a truly "rare day for very special people".

Rare Diseases

A rare disease is considered as that 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.

Rare Diseases

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 was founded in 1997.

EURORDIS