BALKAN CONGRESS FOR RARE DISEASES ROMANIA Cluj- Napoca, June 26-27, Medical University “Iuliu Hatieganu” “Share an inspired vision in RD”.

Posted: May 12, 2009 by mihaiela in conferinte, Evenimente APWR, simbotour
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  1. […] BALKAN CONGRESS FOR RARE DISEASES ROMANIA Cluj- Napoca, June 26-27, Medical University “Iuliu Hatieganu” “Share an inspired vision in RD”. mai 13, 2009 at 6:32 am | In conferinte, evenimente, genzyme, informare, media, parteneri, sponsori | No Comments Tags: balkan, cluj-napoca, conferinta, congres, rare disease detalii aici […]

  2. elutaf says:

    Day 1
    08:30 – 9:00 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 FIELKD 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
    Day 2
    09:00-10:30 BEST PRACTICE AND COOPERATION
    9:30-10:30 BEST PRACTICE AND COOPERATION chairs: 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:

    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: doricad@yahoo.com
    – 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://www.simbotours.ro/go/conference
    Deadline for registration : June 10, 2009;
    Registration fee: 35 eur or 150 lei;
    Permanent updated information about the conference on: https://anbraro.wordpress.com/2009/04/27/balkan-congress-for-rare-diseases-romania/.
    The conference will be accredited with continuous educational credits for doctors, psychologists, social workers, teachers, etc.

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