Thirty years ago, the patients were left with many uncertainties, no networks and no access.
The rarity of the disease made it difficult to identify specialists, little information could be …

Background EURORDIS Care Survey program conducted with over 12000 patients in 23
countries (2002-2008) has concluded that «social security systems are usually designed …

Essay Focus 2040 www. thelancet. com Vol 371 June 14, 2008 fragile X syndrome) in 17
European countries. 11 To identify the main causes of diagnostic delay, 18 000 …

Three features of the cause of rare diseases may be important for the future of the
movement. 1. The category of rare diseases was originally created to remedy the problem …

Rare diseases are a threat to the health of EU citizens, in so far as they are life-threatening
or chronically debilitating diseases with a low prevalence and a high level of complexity …

Improving health and social equity for persons living with a rare disease (PLWRD) is
increasingly recognized as a global policy priority. However, there is currently no …

Around 4% of the global population suffers from a rare disease. Apart from the medical
aspect, economic, organisational, and political approaches remain key aspects when it …

The tale of how rare diseases started to come to public consciousness began more than 30
years ago when Abbey Meyers, who was to become the founder of the National …

Rare Diseases: Understanding this Public Health Priority Page 1 November 2005 “Rare
Diseases: understanding this Public Health Priority” EURORDIS – Plateforme Maladies …

In the year 2008, the German Federal Ministry of Health initiated a comprehensive study on
the topic,“Activities for the improvement of health care for people with Rare Diseases”. The …