Doctors have listed between 6,000 and 8,000 rare diseases in the world. 30 million Europeans are affected by these diseases, most often of genetic origin, including 3 million French. It is to give a little visibility to all these diseases that the “Rare disease day” was established 7 years ago. This year, the theme of the day is: “Together to better support the sick” because, whatever the disease, patients who have it must be able to benefit from personalized support throughout their lives. On this occasion several events will be organized in the different regions: you will find the list on the Rare Disease Platform.
This day is also an opportunity to remember that people with a rare disease or their families can now meet every Monday and Wednesday afternoon to exchange information and chat on the site of Rare Diseases Info Services.
What is a rare disease?
A disease is said to be rare when it affects less than one person in 2000. For France, this is equivalent to less than 30,000 people with the same disease. These diseases are very diverse: neuromuscular, metabolic, infectious, autoimmune diseases, rare cancers, but 80% of them are of genetic origin and 65% are seriously disabling. Among these rare diseases, there are a very large number of “orphan diseases”, that is to say diseases for which there is no treatment.
