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Thursday, February 28, 2013

Rare Disease Day

excerpt from
Rare Disease Day 2013

Rare Disease Day, held on the last day of February each year, seeks to raise awareness for the impact rare diseases have on the lives of patients and those who care for them. The campaign targets the general public as well as decision-makers and enjoys participation from patients and patient representatives, public authorities, policy makers, bio pharmaceutical industry representatives, researchers, health professionals and many others with an interest in rare diseases.

Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While each disease is rare, collectively they affect more than 60 million people in Europe and the US alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.

The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. Approximately 80% of rare diseases have a genetic origin. Over 6000 different rare diseases have been identified to date, affecting an estimated 30 million Europeans collectively. EURORDIS is a non-governmental patient-driven alliance of patient organizations representing 561 rare disease patient organizations in 51 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.

Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008. What began as a European event quickly became international in scope, with participants from more countries joining each year. A record 63 countries and regions participated in 2012 - including participation in all of the 27 EU Member States. Rare Disease Day 2013 already has several first-time participant countries and regions on board – including Bahrain, Iceland, Israel, Palestine and Singapore. Since it began, thousands of events have been held throughout the world, reaching hundreds of thousands of people and resulting in a great deal of media coverage. The political momentum resulting from the Day has also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and the creation of national plans for rare diseases in a number of EU Member States, and now in other countries.

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