National contact point for rare diseases
Rare diseases are chronic, progressive, and disabling and they are often life-threatening.
The National contact point for rare diseases website is a project by the Ministry of Health in Slovenia. The goal of the project is to create a network between health providers, experts, patients with rare diseases and their families. Patients and professionals may access information about the medical care of rare diseases in Slovenia. The site provides the option for telephone or electronic contact to those seeking information during office hours, and access to the latest, reliable and understandable information on rare diseases, treatments, providers, registries and associations.
5
a disease is defined as rare when it affects 5 or less out of 1000 citizens
6−8
thousand
rare diseases are known
(estimate)
30
milion patients with rare diseases are in Europe
(estimate)
120
thousand patients with rare diseases are in Slovenia
(estimate)
