A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 citizens and in the USA when it affects fewer than 200,000 people.
Rare diseases may affect more than 60 million people worldwide.
In the U.S., the health care reform process has been extremely confusing to many people. The language in the various bills is complex. And many of the proposed changes won’t take effect for several years, even if enacted now.
NORD’s position on health care reform, from the very beginning, has been that any plan needs [...]
This decision is part of a significant reshuffle of responsibilities assigned to each Designated Commissionner in the Barosso II European College of Commissionners. For this decision to be implemented the new Commissionners need first to be approved by the European Parliament in January / February. This transfer is an important change. All [...]
Diagnosis
Health professionals have long been so helpless in front of a rare disease that they often did not even dare to make a diagnosis. Not any more. Diagnosis is now available for about 1,900 diseases, though not one single European country can provide all existing tests. Use of existing treatment and drugs has improved. Increased [...]
The European Union and its Member States are faced with the challenge of an emerging field in medicine: personalised medicine. Therapeutic interventions, and in particular medicinal products, are increasingly intended for well targeted and smaller patient populations.
These interventions are usually intended for the prevention, diagnosis, treatment, cure or long term management of severe, debilitating, life-threatening [...]
