This year’s focus of the Rare Diseases Day is on inequalities in health.
It is essential for patients living with a rare disease, that they are diagnosed early enough to start specialised and often life-saving treatment. They are entitled to the same health care access and quality of care as people with a more common disease.
What is a rare disease?
The Council Recommendation on action in the field of rare diseases from June 2009 gives following definition:
“A disease or disorder is defined as rare in the EU when it affects fewer than 5 per 10,000 citizens.”
In Europe there are almost 36 million people suffering of rare diseases.
There are between 6000 and 8000 different rare diseases defined. The difficulty in the diagnosis, as well as in the treatment is that some of the diseases will affect over 200,000 patients, and some merely 10 in Europe!
That is the why building a European network is essential to manage these chronic and life-threatening diseases.
The EHFG 2009 hosted a workshop on Rare Diseases organized by the Austrian Federal Ministry of Health.