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Care for the rare

Amyotrophic lateral sclerosis (ALS), Moebius syndrome, Zebra body myopathy… You’ve probably never heard of them - that’s because they are extremely rare, and in many cases, very serious.

Care for the rare

Separately, each of these rare illnesses affects only a tiny fraction of the population – by definition, less than five people in 10,000 constitutes a rare disease. It is estimated however that today in the EU, some 5-8,000 rare diseases affect about 30 million Europeans.

With so few patients and case histories per rare disease to draw on, relatively little is known about these diseases in comparison to more common disorders. They’re hard to research, diagnose and treat. And even if a proper diagnosis is made, the treatments are often expensive and difficult.

Every life counts

National health services and research institutes thus face a dilemma: how best to allocate limited resources? Widespread diseases or exceedingly uncommon ones?

One effective response to this dilemma is for countries to pool their resources at EU level. Indeed, by sharing knowledge and expertise the European Commission and the 28 Member States can tackle rare diseases together. The aim is to prevent premature deaths, preserve the patients’ quality of life and reduce the occurrence of these diseases.

Orphanet is an online portal which lists all rare diseases from A to Z. ALS for example is the disease that afflicts both the renowned physicist, Stephen Hawking, and the guitarist, Jason Becker.