Balkan Congress


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Balkan Congress

  1. 1. The National Alliance for Rare Diseases in Romania, Romanian Society for Human Genetics and Medical University „Iuliu Hatieganu” Cluj Napoca warmly invite you to attend BALKAN CONGRESS FOR RARE DISEASES ROMANIA Cluj-Napoca, June 26-27, Medical University „Iuliu Hatieganu” „Share an inspired vision in RD” Conference chairs Prof. Segolene Ayme (ORPHANET, Rare Diseases Task Force, France) Antoni Montserrat Moliner (EUROPEAN COMMISSION - DG SANCO)
  2. 2. Day 1 08.30 - 09.00 REGISTRATION 09.00 - 10.30 OPENING OF THE CONFERENCE Expected speeches by the Minister of Health of Romania, Local Authorities, Rector of the Medical University of Cluj-Napoca, Orphanet Europe, Eurordis, European Commission, RONARD 10.30 - 11.00 COFFEE BREAK 11.00 - 13.00 PANEL SESSION Prof. Dr. Segolene Ayme (ORPHANET, Rare Diseases Task Force, France), Commission Communication and Council Recommendation on RD EU INITIATIVES TO IMPROVE THE ACCESS TO CARE Anders Olauson, president European Patient Forum Wills-Hughes Wilson, Senior Director Health Policy Europe, Genzyme 13.00 - 14.00 LUNCH 14.00 - 16.00 PARALEL WORKSHOPS Co –chairs. Prof. Pop Victor SRGM, Dr. Cristina Vladu NEEDS ASSESMENT IN THE FIELD OF THE RD 1. Diagnosis and screening – chair Dr. Cristina Skrypnyk, Prof. Dr. Maria Puiu 2. Treatment and rehabilitation – chair. Dr. Ioana Rotaru & Prof. Dr. Daniel David 3. Social services - Dr. Mihai Gafencu, Dorica Dan 4. Education and Research – Prof. Dr. Victor Pop & Dr. Cristina Vladu 15.30 – 16.00 Report the results in the plenary session 16.00 - 16.30 COFFEE BREAK 16.30 - 18.30 PROBLEMS ENCOUNTERED IN DIAGNOSIS AND MANAGEMENT OF THE RARE DISEASES IN BALKAN AREA – chair. Dr. Cristina Rusu, Iasi 1. Delays in diagnosis and insufficient specialized health care services for RD in Balkan area (screening, genetic tests availability, centers, etc.) 2. Relevant experiences in different states (Romania, Hungary, Croatia, Bulgaria etc.) Report of the results in the plenary session day 2 – Dr. Pogany Gabor, Hungary 18.30 - 19.30 GALA DINNER
  3. 3. Day 2 09.30 - 10.30 BEST PRACTICE AND COOPERATION Chair, Prof. Dr. Grigorescu Sido; Methodology to issue best practice guidelines and co-operate with physicians in Balkans; Initiatives from Balkan countries 10.30 - 11.00 COFFEE BREAK 11.00 - 13.00 PANEL SESSION Christel Nourissier - Chair, EURORDIS Panel discussions regarding the actions undertaken in Balkan area in order to define a national policy on Rare Diseases - Invited speakers. different stakeholders from each country 14.00 - 17.00 RARE DISEASES MANAGEMENT co chairs - Dr. Gabor Pogany & Dr. Aurelia Szekely Interdisciplinary approach in management of the RD (CROMOZOMIAL, METABOLIC, NEUROLOGICAL, ENDOCRINE, etc.) Maryze van Schoneveld (Pompe patient; International Pompe association) Neuromuscular disease, her experience in negotiating with authorities (funding); building a Patient society; her own experience with a genetic; life threatening disease; Prof. Dr. Anna Tylki-Szymanska. metabolic disorders; Polish experience Scientific presentations from selected abstracts (15 min. / each); 17.00 - 17.30 COFFEE BREAK 17.30 - 18.30 FROM RARE DAY TO EVERY DAY CARE Why and how to advocate for RD – Dorica Dan, RONARD Patients advocacy groups, RONARD Professional advocacy groups, BAPES/ICRDOD 18.30 - 19.00 CONCLUSIONS AND HOMEWORK 19.00 DINNER Authors are invited to write and submit abstracts for oral and poster presentations according to the following instructions.
  4. 4. International Conference Committee Prof. Dr. Segolene AYME (ORPHANET, Rare Diseases Task Antoni Montserrat Moliner (EUROPEAN COMMISSION Force, France), Conference chair -DG SANCO), Conference chair Christel Nourissier, EURORDIS Dorica Dan – RPWA/ RONARD Scientific Committee Prof. Dr. Paula Grigorescu - Sido - chair Prof. Dr. Victor Pop - chair Prof. Dr. Maria Puiu Dr. Cristina Skrypnyk Conf. Dr. Vlad Gorduza Conf. Dr. Cristina Rusu Prof. Dr. Emilia Severin Conf. Dr. Corin Badiu Dr. Cristina Vladu Prof. Dr. Daniel David Instructions for writing abstracts • Abstracts must be submitted in English • Abstracts should not exceed 250 words • Font should be Times New Roman, size 10 pts • Title of the abstract should be written in capital letters (size 12 pts, Times New Roman) • Authors start a new line and write the last name and first name initial for all authors without titles; underline the name of the presenting author • Start a new line and write the name of the institution, city and country for all authors • Then write down the e-mail address of the author presenting the paper • Abstracts should consist preferably of aim of the study, methods, results and conclusions • Your abstract will be published exactly as submitted (linguistic accuracy is the responsibility of the author) • Accepted abstracts and full-text presentation will be published in the supplement of Journal of Paediatrics Instructions for submitting abstracts • Online submission: • Abstracts submitted by fax will not be accepted • Submission Deadline extended to May, 25, 2009 • Notification of Acceptance of Abstracts will be sent electronically to the corresponding author by June 2, 2009 Technical equipment • LCD projector will be available for oral presentation. • Speakers are kindly asked to submit their computer presentations one day or at least two hours before their lecture in the preparation room and give them to the technician. • Preparation room will be open daily from 8.00 am to 7.00 pm. • Poster presentations • Posters must be written in English. • Poster dimensions. max. 80 cm (width) x 120 cm (height) • Posters will be displayed in the congress area on poster panels. The authors should bring posters in person. Supplies for poster mounting will be provided by the Congressional Service. Registration and accomodation http.// Deadline for registration June 10, 2009 Registration fee 35 eur or 150 lei; Permanent updated information about the conference on The conference will be accredited with continuous educational credits for doctors, psychologists, social workers, teachers etc. Eveniment mediatizat cu sprijinul