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. 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. 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. 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: 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
http://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.
Eveniment mediatizat cu sprijinul