The Planet of Rare Diseases - European Parliamentary Network on Rare Diseases

Planeta bolilor rare
Dan Alexandru


Promoting rare diseases as a public health priority is one of the most important stated objectives to EURORDIS. With this in mind, we have come to the conclusion that a further step to take is to actually clarify what rare diseases are as a public health concept. In its work with national and EU health authorities EURORDIS regularly comes across the fact that policy- and decision-makers know very little about rare diseases.

An example of confusion is the concept of rarity: rare diseases are rare (defined as less than 1 person in 2,000 in Europe), but rare disease patients are many.

Another frequent confusion is made between rare diseases and neglected diseases (common, communicable diseases mainly affecting patients living in poor, developing countries). Today we will listen to the speech given by of Martin Seychell, the Deputy Director General of DG SANTE.