National Alliance of People with Rare Diseases – 3

The 1st National Conference of Patients with Rare Diseases took place on 14 April 2007 from 10:30 am, in Sofia. About 50 representatives of 16 rare disease (ex. achondroplasia, cystic fibrosis, epidermolysis bullosa, hereditary angioedema, Gaucher disease, lymphoma, thalassemia major etc.) and 5 patient associations attended the conference. The conference was opened by Dr. Emil Rainov – vice minister of health. Although people suffer different rare diseases, they all share the same experience and difficulties in the daily life routine: lack of understanding from the community, lack of information, delay in put of the right diagnosis, restricted access to treatment. As a result, decision for establishment of the National Alliance of People with Rare Diseases was taken and discussions of the statute of the Alliance were initiated. Further information will be published on our website soon.