The fact is that while a disease might be labeled as “rare”, the number of persons in Europe suffering from a rare disease is estimated at over 30 million. Rare diseases do not only affect those diagnosed, but their families, friends, care takers and society as a whole. While one rare disease may affect as few as 1 in 50,000 people, rare disease patients collectively comprise 6 to 8 % of the EU population. These statistics do not seem as comforting.
The European Conference on Rare Diseases and Orphan Products is rare. It is the one event where everyone from patients, to policy makers, healthcare professionals, industry, researchers and academics are given the opportunity to meet, exchange information and ideas and join together in the fight against rare diseases. This event provides a unique platform comprising all rare diseases, across all European nations. With over 100 speakers and countless professionals in attendance, this annual conference covers the latest research, developments in new treatments and information regarding innovations in health care, social care and support at both the European and national levels.
ECRD allows you to be on the front lines in the fight against rare diseases, whether you are a patient, family member, healthcare professional, researcher, or simply an interested citizen. The diseases are rare, but the support doesn’t have to be.
A rare disease is classified in Europe as being a condition which affects less than 1 in 2,000 individuals. Because rare disease patients represent the minority, there is often a lack of public awareness. Common issues facing patients and families living with rare diseases include delayed diagnosis, access to care and medication and a feeling of isolation. This is true across different countries, cultures and all rare diseases.
Orphan products are medicinal products intended for the diagnosis, prevention, and treatment of rare diseases.
The responsibility of this web site lies with the author and the Executive Agency
for Health and Consumers is not responsible for any use that may be made of the information contained therein