NATIONAL ALLIANCE OF PEOPLE WITH BULGARIAN ASSOCIATION FOR PROMOTION RARE DISEASES (NAPRD) OF EDUCATION AND SCIENCE (BAPES) Address: 59 Dragan Tsankov blvd., 1000 Sofia, Bulgaria Address: 4 Bratia Sveshtarovi str ., 4017 Plovdiv, Bulgaria e-mail:
[email protected] ; phone +359-888-323748 e-mail:
[email protected] ; phone +359-897-858870 BULGARIAN EUROPLAN NATIONAL RARE DISEASES CONFERENCE FINAL REPORT I. General information Country BULGARIA Date & place of the National Conference 28-30 May 2010, Congress Centre of Novotel, Plovdiv Website www.conf2010.raredis.org Organisers National Alliance of People with Rare Diseases (NAPRD) Bulgarian Association for Promotion of Education and Science (BAPES) Members of the Steering Committee Mr. Vladimir Tomov, President of NAPRD Prof. Rumen Stefanov , President of BAPES Prof. Radka Tincheva, Chair of the National Consulting Committee for Rare Diseases (NCCRD) to the MoH Dr. Stamen Popov , Association of the Research-Based Pharmaceutical Manifacturers in Bulgaria (ARPharM) Dr. Ivelina Yordanova , Medical University of Pleven/ DEBRA Bulgaria Mrs. Dorica Dan , EURORDIS Names and list of Workshops Panel Session 1 – Rare diseases policies and recommendations for actions Panel Session 2 – Reporting proposals from the conference workshops and seminars; adopting conference memorandum Workshop 1 – Methodology and governance of the Bulgarian national plan for rare diseases Workshop 2 – Patient empowerment and specialised services Workshop 3 – Definition, codification and inventorying of rare diseases Workshop 4 – Research on rare diseases Workshop 5 – Rare diseases in the focus of hematology Workshop 6 – Rare diseases in the focus of 1 physical medicine and rehabilitation Workshop 7 – Rare diseases in the focus of immunnology Workshop 8 – Rare diseases in the focus of medical genetics and pediatrics Workshop 9 – Standards of care for rare diseases.