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.
Clarifying the concept of rare diseases
To clarify the concept of rare diseases as a public health issue, we took the initiative to create a unique document covering all aspects of rare diseases "Rare Diseases: A Public Health Priority".We encourage everyone to use this document, especially at the national level.
The rare disease community will be grateful to you for helping it put forward rare diseases as a much needed public health priority in the EU. Your comments and feedback are always welcome.
The concept of rarity
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).
A crucial realisation is that it can happen to anybody at any stage of life. Indeed, a rare disease is not unusual.