site.btaAdvocates of Decent Treatment for People with Rare Diseases Receive President's Badge of Honour

Persons who have helped advance the cause of adequate treatment of patients suffering from rare diseases received the Bulgarian President's Badge of Honour during the 14th National Conference on Rare Diseases and Orphan Drugs. The two-day conference opened in Plovdiv on Friday.

The high distinction was conferred on: Rumen Stefanov, Director of the Institute for Rare Diseases; Vladimir Tomov, Founder and President of the National Alliance for Persons with Rare Diseases; Polina Milusheva-Mandadzhieva, Founder and President of the National Association of Patients with Growth Hormone Deficiency; Yordanka Petkova, Founder and President of the Association of Hereditary Angioedema; and Todor Mangarov, President of the Pulmonary Hypertension Association. The badge was also awarded posthumously to Iliana Tonova, who headed the National Association of Sarcoidosis.

The National Conference on Rare Diseases and Orphan Drugs, organized by the Institute for Rare Diseases, is an annual forum for medical specialists, patients, students of medicine, industrialists and health authorities to present and discuss novelties in the diagnosis, treatment and follow-up of rare diseases, the development of European reference networks and access to innovation.

Bulgarian President Rumen Radev said in a greetings address that every person with a rare disease should enjoy equal rights with other patients in the public health system. He said: "I believe that by pooling our efforts, with the support of the public institutions, which, thanks to you, is becoming stronger with every passing year, we will provide better opportunities in this field."