In order to increase public awareness and promote activities of SERBORDISinn, Sonja Pavlovic participated in the Symposium “Rare Diseases in Serbia – Day-by-day, hand in hand” organized to mark Rare Disease Day 2015. This event was organized by Clinical Centre of Serbia and National Organization for Rare Diseases of Serbia. The event was held at the Faculty of Medicine, University of Belgrade. Dr Sonja Pavlovic, CP of SERBORDISinn gave a lecture: “Diagnostic Breakthrough for Rare Diseases in Serbia: Next-generation sequencing”.
SERBORDISinn & 2014 Golden Helix Symposium “Genomics of Rare Diseases” was one of the main dissemination and promotion activities of the FP7 REGPOT SERBORDISinn. In order to attract more participants from abroad, IMGGE organized the Symposium in collaboration with Golden Helix Foundation. The Symposium was under the auspices of Ministry of Education, Science and Technological Development Republic of Serbia, Genomic Medicine Alliance and RD-Connect, while Orphanet and Public Health Genomics were communication sponsors. The Symposium was accredited by the Serbian Health Council (No. A-1-1990/14) for continuous medical education with the aim to attract more medical doctors and biochemist. IMGGE provided a free booth for the National organization for rare diseases of Serbia (NORBS) thus enabling patients to actively participate in the Symposium.
Symposium was organized into four sessions that addressed following topics: Public Health of Rare Diseases, Genomics of Rare Diseases, Pharmacogenomics and Individualized Therapy and Rare Diseases in Balkan Countries. Over 39 international, Balkan and Serbian researchers with an expertise in the field of rare diseases were invited to give lectures, and 128 participants (molecular biologists, biochemist, medical doctors and representatives of the relevant governmental departments) from Serbia and Balkan region participated in the event.
Media coverage: The event was announced and commented in Serbian broadcasting and printed media thus increasing mentions of IMGGE in public media.
FOP (Fibrodysplasia Ossificans Progressiva) is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues.
Professor Frederick Kaplan, M.D., is the Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine and Chief of the Division of Molecular Orthopaedic Medicine at the Perelman School of Medicine of the University of Pennsylvania. He has dedicated his professional career to patients suffering from the FOP. Professor Kaplan has received numerous awards and honors including Best Doctors in America and was recognized as an American Hero by Newsweek magazine. He now leads the only center dedicated exclusively to the basic research and amelioration of FOP, the Center for Research in FOP and Related Disorders.
Professor Eileen Shore, Ph.D., is the Cali and Weldon FOP Research Professor in the Departments of Orthopaedics and Genetics in the Perelman School of Medicine at the University of Pennsylvania, and is the co-Director of the Center for Research in FOP and Related Disorders. Her work led to the discovery of the mutated genes in FOP, and she currently investigates the cellular targets and molecular pathways involved in regulation of cell differentiation leading to cartilage and bone formation and identifying and testing potential therapeutic strategies.
It is our great pleasure to announce the lectures of Prof Frederick Kaplan and prof Eileen Shore which will take place at the University Childrens’ Hospital, Belgrade, on May 13th 2014. The Symposium is organized by the Institute of Molecular Genetics and Genetic Engineering, University of Belgrade, as an activity of the FP7-REGPOT-SERBORDISinn project.
University Childrens’ Hospital, Belgrade
May 13th 2014, 13 PM
- Dr Sonja Pavlović, FP7 REGPOT SERBORDISinn Project Coordinator
Institute of Molecular Genetics and Genetic Engineering, University of Belgrade
Premier Next Generation Sequencing in Serbia
- Prof. dr Frederik Kaplan
University of Pennsylvania, USA
FOP: From Mysteries to Medicines
- Dr Eileen Shore
University of Pennsylvania, USA
Fibrodysplasia Ossificans Progressiva – a Rare Genetic Disorder of Extra-Skeletal Bone Formation
- Jelena Milošević, Belgrade
FOP from the patient’s perspective
RTS1 Jutarnji program – 13.05.2014.
RTS2 Svet zdravlja – 17.05.2014.