On initiative of the European rare diseases alliance EURORDIS, the 29th of February, which is the rarest day of the year, was granted an official status of Rare Disease Day. In non-leap years the day is transferred to 28 February.
Rare diseases are present in every area of medicine. About 80 percent of them arise from genetic disorders. Cystic fibrosis is also a rare disease.
Despite the fact that the cystic fibrosis is not as frequent as many other diseases , it should be studied in an orderly fashion as well as other rare diseases in order to find the most efficient treatment modality. Any person suffering from a disease, even very rare, has the right to get an appropriate medical treatment.
The public health authorities, pharmaceutical companies, patient-driven alliances and charities should act in a spirit of good collaboration for the benefit of patients with rare diseases. Under that condition only deep system changes are possible. And we thank all our partners, friends, colleagues, donors, and of course doctors, everybody who contributes to the present and the future of people with cystic fibrosis!