First Workshop in Bulgaria on
«HEREDITARY ANGIOEDEMA – DIAGNOSTICS, THERAPY AND EPIDEMIOLOGY»
Date:
11 March 2005 (Friday) at 13:00 – 16:00 h
Venue:
hall Puldin, hotel “Trimontium-Princess”, Plovdiv, Bulgaria
Organizer for Bulgaria:
Information Centre for Rare Diseases and Orphan Drugs (ICRDOD)
Sponsors:
Rotary club – Plovdiv, Bulgaria
Foundation for the Prevention and Treatment of Fatal
Angioedematous Disease, Hungary
Participation fee:
For patients and doctors – FREE after preliminary registration
For pharmaceutical companies and representatives – send a mail to bapes@mail.bg
Program:
– 13:00-13:10
Assoc. Prof. Margarita Stefanova, MD, PhD – Medical University of Plovdiv, Bulgaria
Opening of the workshop
– 13:10-13:30
Dr. Henriette Farkas, MD, PhD – Department of Internal Medicine, Semmelweis University, Budapest, Hungary
Clinics, diagnosis and therapy of the hereditary angioedema
– 13:30-13:50
Assoc. Prof. Margarita Stefanova, MD, PhD – Medical University of Plovdiv, Bulgaria
Epidemiology and genealogical investigations of the hereditary angioedema in Bulgaria
– 13:50-14:20
Dr. Maria Staevska, MD – Medical University of Sofia, Bulgaria
From the first patient to molecular studies: 32 years of HAE research in Bulgaria
b]- 14:20-14:50
Dr. Lilian Varga, PhD – Complement Laboratory, Semmelweis University, Budapest, Hungary
Centre for Hereditary Angioedema
– 14:50-15:20
Dr. Rumen Stefanov, MD, PhD – Information Centre for Rare Diseases and Orphan Drugs
Necessity for increasing the knowledge of medial professionals about rare diseases and orphan drugs
– 15:20-16:00
Discussion
CURRICULUM VITAE Name: Prof. Peter Tivchev, MD, DMSc Current work Address: Education: Professional work history chart: Academic appointments: Professional affiliations: Language proficiency: Publications: ————————————————————————- ———————————————————————— Dear Dr. Stefanov, At a meeting of the Board of directors we decided Additional information at www.bulortho.org. Success in the initiative! President of BOTA: /signed/ Prof. P. Tivchev 10.01.05 ———————————————————————— LINKS: • Who is Prof. P. Tivchev – click Download the letter-support from the Bulgarian Orthopedic-Traumatology Society – click
PROFESSIONAL EXPERIENCE • 2017 – CURRENT • 2015 – CURRENT • DECEMBER 2010 – DECEMBER 2017 • MARCH 2008 – DECEMBER 2011 • JANUARY 2006 – DECEMBER 2009 • MAY 2008 – JANUARY 2012 • NOVEMBER 2004 – MAY 2006 • SEPTEMBER 2000 – NOVEMBER 2004 • JUNE 2003 – JUNE 2004 • 2003 – 2015 • MARCH 2001 – MARCH 2002 • APRIL 1998 – SEPTEMBER 2000 EDUCATION AND TRAINING • 2016 – 2018 • 2000 – 2004 • 1998 – 2003 • 2002 • 2002 • 2002 • 2000 • 1999 • 1998 • 1991 – 1997 • 1986 – 1991 PERSONAL SKILLS AND COMPETENCES ————————————————————————- ———————————————————————— To: Dr. Rumen Stefanov, PhD Outgoing number: 15-00-151 Re: Establishment of a National Program for Rare Diseases and Orphan Drugs in Bulgaria Dear Dr. Stefanov, I read the deposited by you proposal for establishment of a National program for rare diseases and orphan drugs in Bulgaria (letter with incoming number 15-00-151/11.Nov.2004 of MoH). Meanwhile, I became acquainted with the aim and activities of the Information Centre for Rare Diseases and Orphan Drugs (ICRDOD), created by your Organization. I think that this project is of exceptional importance for patients with rare diseases, as well as for doctors. At the other hand, it will increase the international prestige of Bulgaria, becoming the first Eastern European country with established and functioning structure like this. The areas, in which we can collaborate, are: With best wishes for successful collaboration, /signed and sealed/ Vice-minister ———————————————————————— LINKS: • A link to the Bulgarian Ministry of Health – click (Bulgarian, PDF format, size 551Kb) ———————————————————————— ———————————————————————— Ranica, October 15th 2004 TO WHOM IT MAY CONCERN Re: Information Centre for Rare Diseases and Orphan Drugs in Bulgaria Hereby, we are expressing our support for the Bulgarian Association for Promotion of Education and Science to develop successfully the project “Information Centre for Rare Diseases and Orphan Drugs in Bulgaria”. The number of specialized centres for rare diseases in Europe is limited. However, their importance and impact on the public health of the European Community is enormous. First, they provide patients, relatives and doctors with up-to-date high- quality information about the conditions of interest. Second, they systemize and create databases of hospital settings, genetic and clinical laboratories and prominent medical teams, which are occupied with a given rare disease research or study. Third, they create databases of patients with rare diseases. Fourth, these centres serve as a bridge between the patients with rare diseases and the public health care systems by advocating for the basic human right to receive contemporary and equal medical care and by lobbying for adequate rare disease and orphan drug legislation. The existing information centers for rare diseases in Europe are not targeting the Eastern European countries (EEC), in which more than 40% from the total population of Europe are living, according to the United Nations Population division. The information, those centres provide is mainly in Latin-based languages – English, Italian, French, Dutch etc. Their databases contain relevant information, useful and utilizable for citizens from the Western European countries only. At the other hand, the experience and knowledge that those institutions have accumulated through the years should not remain reserved, but must be disseminated among the others, thus putting the basis of a real pan-European network on rare diseases. The Clinical Research Center for Rare Diseases “Aldo e Cele Daccò” (a part of the Mario Negri Institute for Pharmacological Research, Italy) is one of the oldest European facilities, dedicated entirely on the rare diseases promotion and research. It operates successfully one of the first Information Centre for Rare diseases (ICRD) in Europe – a free of charge public service, founded in 1993 and aimed to provide up-to-date information on rare diseases with particular emphasis on aetiology, pathogenesis, genetic aspects, preventive measures, established and experimental treatments, referral research centres. Based on the knowledge and experience of the Mario Negri Institute, we are glad to support the establishment of an Information Centre for Rare Diseases and Orphan Drugs, situated in Bulgaria and serving also the other Eastern European and ex-Soviet countries. The specific objectives of the project also include the establishment and equipment of an Office of Rare Diseases, creating multilingual WWW site on rare diseases (in Bulgarian, English and Russian languages), building registries of patients, associations, clinical trials and clinical centres, free phone services etc. The Bulgarian Association for Promotion of Education and Science (BAPES) is a young and ambitious Bulgarian non-governmental, non-profit organization. Its founder, Dr. Rumen Stefanov has more than 3 years experience in rare diseases, being a Marie Curie fellow at the Mario Negri Institute under the Program of EC “Quality of life and management of living resources” in 2001. He is a specialist in public health and health management and holds the position of a senior assistant professor in public health at the Medical University of Plovdiv (Bulgaria). For the period June 2003 – June 2004 he has also contributed as a consultant in public health and epidemiology at the Clinical Research Center for Rare Diseases “Aldo e Cele Daccò”. So, entirely convinced in the exclusive importance of the project at both the national and European level, as well as in the organizational capacity of the coordinators, we once again express our readiness to support the establishment of an Information Centre for Rare Diseases and Orphan Drugs in Bulgaria. Giuseppe Remuzzi, MD, F.R.C.P. LINKS: • Who is Prof. Giuseppe Remuzzi – click • Link to the Mario Negri Institute for Pharmacological Research – click ———————————————————————— ———————————————————————— Union of the Scientific Medical Societies in Bulgaria To: Dr. Rumen Stefanov, PhD LETTER – SUPPORT Dear Dr. Stefanov, With this letter we would like to express our support to the established Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) in Bulgaria – a project of the Bulgarian Association for Promotion of Education and Science (BAPES). We think that this initiative will be of great benefit for providing health information to patients with rare diseases, as well as for the increase of medical knowledge and qualification of medical professionals in Bulgaria. We can work together and collaborate in several directions: With wishes for beneficial work together, /signed and sealed/ Prof. P. Stamenova Sofia, 08.Dec.2004 LINKS: • Who is Prof. Dr. Paraskeva Stamenova, MD, DMSc – click ———————————————————————— CURRICULUM VITAE Name: Dr. Ivan Ivanov, PhD Affiliation with us: Current work Address: Education: Professional qualifications and PG courses: Work experience: Current research projects: Publications: ————————————————————————- BOARD CERTIFICATION: SOCIETIES: RESEARCH INTERESTS AND ACTIVITIES: —————————————————— To download a copy of the activity report, please click
Trauma Clinic, University Hospital “Queen Joanna”, Sofia, Bulgaria
• Doctor of Medical Since (DMSc) Thesis, M-s Perthes – Diagnosis and Treatment – 1997
• PhD Thesis, Surgical Treatment of M-s Perthes – 1984
• Fellowship in Arthritic Reconstructive Surgery, Medical University of Warsaw (Poland) – 1977
• Residency in Orthopaedic Surgery, Medical University, Sofia (Bulgaria) – 1976
• Internship in General Surgery, Medical University, Sofia (Bulgaria) – 1969
• M.D. Degree, Medical School, Medical University, Sofia (Bulgaria) – 1967
• Undergraduate Degree, Sofia (Bulgaria) – 1962
• Head of Orthopaedic and Trauma Dept., Medical University, Sofia (Bulgaria) – 1991-now
• Vice-Head of Trauma Center, Medical University, Sofia (Bulgaria) – 1989-1991
• Head of Pediatric Orthop. Dept., Medical University, Stara Zagora (Bulgaria) – 1979-1989
• Asist. Professor, Orthopaedic Clinic, Medical University, Sofia (Bulgaria) – 1972-1979
• General Surgeon, Reg. Hospital Lukovit (Bulgaria) – 1969-1972
• Vice Dean, Medical Faculty, Medical University, Sofia (Bulgaria) – 1999
• Clinical Professor, Medical University, Sofia (Bulgaria) – 1999
• Asoc. Professor, Medical University, Stara Zagora (Bulgaria) – 1986
• Asist. Professor, Medical University, Sofia (Bulgaria) – 1974
• President of BOTA – 2004
• SICOT – 1993
• EFFORT – 1990
• AASKH – 1997
• English – Working knowledge
• German – Working knowledge
• Russian – Working knowledge
• Original articles – 132
• Monographs – 5
• Congress and conference – 38
Bulgarian Orthopedic-Traumatology Society (BOTA)
8 Bialo More str, 1527 Sofia, Bulgaria
phone: 00359-2-9432312, fax: 00359-2-9432122, e-mail: tivchev@abv.bg
to support officially the project of the Bulgarian Association
for Promotion of Education and Science for establishment
of the Information Centre for Rare Diseases and Orphan Drugs
in Bulgaria. As contact persons from our Society, who will be
responsible for interaction and collaboration, we nominee:
• Dr. Vasil Jablanski (hospital “Tzaritza Joanna”)
• Dr. Elena Mateva (hospital “Tzaritza Joanna”)
– Medical Center “RareDis” Ltd.
– DIRECTOR
– Institute for rare diseases at the Bulgarian Association for Promotion of Education and Science
(More info at: https://www.raredis.org/about-us?lang=en)
– DIRECTOR
– Medical University of Plovdiv, Faculty of Public Health
– DEAN
– Medical University of Plovdiv, Bulgaria
– Department of Social Medicine and Health Management
– HEAD OF DEPARTMENT
– City University of Seatle in Bulgaria
– MBA Programme
– LECTURER
– Medical University of Plovdiv, Bulgaria
– Department of Social Medicine and Health Management
– ASSOCIATE PROFESSOR IN PUBLIC HEALTH
– Medical University of Plovdiv, Bulgaria
– Department of Social Medicine and Health Management
– CHIEF ASSISTANT PROFESSOR
– Medical University of Plovdiv, Bulgaria
– Department of Social Medicine and Health Management
– SENIOR ASSISTANT PROFESSOR
– Mario Negri Institute for Pharmacological Research, Italy
– Clinical Research Centre for Rare Diseases “Aldo e Cele Dacco”
– VISITING SCIENTIST/CONSULTANT IN PUBLIC HEALTH AND EPIDEMIOLOGY
– Bulgarian Association for Promotion of Education and Science
– CHAIR OF THE BOARD
– Mario Negri Institute for Pharmacological Research, Italy
– Clinical Research Centre for Rare Diseases “Aldo e Cele Dacco”
– CLINICAL RESEARCH FELLOW under the Quality of life and management of living resources – Marie Curie Fellowship
– Medical University, Plovdiv, Bulgaria
– Department of Social Medicine
– ASSISTANT PROFESSOR
– Medical University of Pleven, Bulgaria
– State Commission for Post-graduate Specialization
– SPECIALTY IN HEALTH ECONOMICS
– Medical University of Plovdiv, Bulgaria
– Higher Testimonial Committee, Bulgaria
– DOCTOR OF MEDICINE (PHD)
– Medical University, Plovdiv, Bulgaria
– State Medical Commission, Ministry of Health, Bulgaria
– SPECIALTY IN SOCIAL MEDICINE AND HEALTH MANAGEMENT
– Medical University, Plovdiv, Bulgaria
– Post-graduate course “HEALTH MANAGEMENT”
– International Summer School in Applied Statistics and Econometrics, organized by the Association of Bulgarian Statisticians with the financial support of the Open Society Institute
– Post-graduate course “MODERN APPROACHES TO TEACHING AND RESEARCH IN DEMOGRAPHY IN THE REGIONS WITH ETHNIC MINORITIES”
– International Inter-University Centre of Medical Radiation Physics/Engineering – a consortium of King’s College London (UK), Florence University (Italy), University of Dublin (IR), Medical University Plovdiv (Bulgaria) and Technical University Plovdiv (Bulgaria)
– Post-graduate course “INFORMATION TECHNOLOGIES IN MEDICINE”
– Mediterranean School of Biostatistics, Epidemiology and Health Care Research
– Harvard School of Public Health, USA & Consiglio Nazionale delle Ricerche, Italy
– Post-graduate course “BIOSTATISTICS, EPIDEMIOLOGY AND HEALTH CARE RESEARCH”
– Mediterranean School of Medical Statistics and Clinical Epidemiology
– Harvard School of Public Health, USA & Consiglio Nazionale delle Ricerche, Italy
– Post-graduate course “MEDICAL STATISTICS AND CLINICAL EPIDEMIOLOGY”
– Youth Scientific Association “Asklepios”,
– Higher Medical Institute, Plovdiv, Bulgaria
– Post-graduate course “BASICS OF SCIENTIFIC RESEARCH”
– Faculty of Medicine, Higher Medical Institute, Plovdiv, Bulgaria
– Passed 43 oral and written exams with the final average mark of 5.41 (90.2 %).
– Passed the final State Exams with the average mark of 5.60 (93.3%)
– MSC IN HUMAN MEDICINE
– English Language High School “Georgi Kirkov”, Plovdiv, Bulgaria
– I studied the English Language as a main subject and passed all oral and written exams with the final average mark of 5.86 (97.7%).
– HS DIPLOMA; ENGLISH LANGUAGE INTERPRETER – CORRESPONDENT
• Languages: BULGARIAN (native), ENGLISH (advanced), ITALIAN (advanced), RUSSIAN (advanced)
Bulgarian Association
for Promotion of Education and Science
Sofia, 20.Dec.2004
• Advisory and expert help for including rare diseases in the Bulgarian National Health Strategy;
• Organization and participation in working meetings and scientific forums оn the topic;
• Stimulation of the scientific work and research on rare diseases;
• Link addition between the internet sites of the MoH and ICRDOD.
Prof. Oleg Hinkov
Research Coordinator
————————————————————————
(English, PDF format, size 583Kb)
Bulgarian Society of Neurology
Office: Department of Neurology, blvd. Tzarigradsko shosse 4 km, 1113 Sofia, Bulgaria
tel: +359 2 709 031, fax: +359 2 709 309
Chairman of the Bulgarian Association
for Promotion of Education and Science
from Prof. Dr. Paraskeva Stamenova
Chairman of the Bulgarian Society of Neurology
• Mutual consultancy and expert support:
– Prof. Dr. V. Bojinova – consultant in pediatric neurology
– Prof. Dr. I. Turnev – consultant in medical genetics
– Prof. Dr. Iv. Milanov – consultant in parkinsonism and vertebral diseases
– Prof. Dr. P. Stamenova – consultant in brain vascular diseases
– Prof. Dr. P. Shotekov – consultant in brain vascular diseases
– Prof. Dr. D. Georgiev – consultant in neurodegenerative diseases
– Prof. Dr. M. Daskalov – consultant in neurodegenerative diseases
– Dr. M. Milanova – consultant in medicine of sleep
– as well as other members of our Society upon request.
• Joint organization and participation in scientific forums;
• Topical health information and health education;
• Adding links and information in the Internet sites;
Chairman of BSN
————————————————————————
(Bulgarian, PDF format, size 302Kb)
Consultant, volunteer unpaid support
Dept. Pediatrics & Med Genetics, Medical University, 15A V.Aprilov blvd, 4002 Plovdiv, Bulgaria
• “Ph.D.” degree in 1999 for the thesis “The Role of Imaging Transfontanel Ultrasonography in the Follow-up of High Risk Infants (a comparative clinical-ultrasonographic study)”.
• State Diploma in Paediatrics, Sofia Higher Medical School, Bulgaria, 1992.
• “M.Sc.” degree in medicine, Medical University, Plovdiv, Bulgaria, 1991-1997, graduated with Hippocrates Gold Medal for excellent education in medicine of the Bulgarian Medical Academy.
• Secondary education in the English Language School, Plovdiv, Bulgaria, 1971-74
• Salzburg-Philadelphia Seminars on Paediatric Gastroenterology, Salzburg, Austria, 2004.
• European Paediatric Neurology Society Course on Epilepsy and Other Paroxysmal Disorders, Taormina, Italy, 2003.
• Basic training course in Prechtl’s method on qualitative assessment of general movements, Graz, Austria, 2001.
• Teaching course in sleep eeg in children and youngsters, Dept. Paediatrics, Graz University Hospital, Graz, Austria, 2001.
• Internship in Paediatric Neurology, Dept. Paediatrics, Graz University Hospital, Graz, Austria, 2001.
• Training course in Epileptic Encephalopathies, Baden-Baden, Germany, 2001.
• Training in Paediatric Neurology, Sofia Medical University, 2000.
• Training course in Clinical Neurophysiology, Sofia Medical University, 2000.
• Teaching and training course in molecular biology and molecular pathology, Medical Faculties of Namur ( Belgium), Bonn (Germany), Plovdiv and Sofia (Bulgaria), JEP-08121-94, 1996-1997.
Bulgaria, June 1995;
• Salzburg-Philadelphia Seminars on Paediatric Neurology, Salzburg, Austria,1996
• Training course in Paediatric Neurology, Meical University-Sofia, 1996.
• Postgraduate training in Paediatric Neurology, at Prof. Dr. Raphael Weitz, Children’s Medical Center of Israel, Tel-Aviv, 1993 -1994.
• Training courses in ultrasonography in paediatrics, Sofia Higher Medical School, 1993.
• Senior Assistant Professor, Dept. Paediatrics and Medical Genetics, Medical University, Plovdiv, Bulgaria, 1998 -present
• Consulting neuropaediatrician at the Home for Medical and Social Care for Infants, Plovdiv, 2001 – present.
• Assistant Professor, Dept. Paediatrics, Med University, Plovdiv, Bulgaria, 1988-1998.
• Paediatrician, Regional Hospital, Pazardjik, Bulgaria, 1988-89.
• Principal investigator
Title of the project: “Investigation upon symptomatic cytomegalovirus infection in infants in the first year of life”, funded by Medical University, Plovdiv, 2003-2005.
• Collaborative Researcher
Title of the project: “Pilot screening for subtelomeric chromosomal aberrations in unknown mental retardation”, funded by Medical University, Plovdiv, 2001-2004.
Dr. Ivanov has published in Bulgarian and international journals: Pediatia (Sofia), Folia Medica (Plovdiv), European J. Pediatrics, European J. Ultrasound, Sexually transmitted diseases, Acta myologica and others. He has written chapters on paediatric neurology in textbooks and other teaching materials. 
Prof. Paraskeva Stamenova, MD, DMSc
Professor of Medicine
Chairman of Department of Neurology,
University hospital “Queen Joanna”, Sofia, Bulgaria
• Anesthesiology, 1970
• Neurology, 1980
• ProScience Research Clinic, Linden, Germany
• Bulgarian Society of Neurology – Chairmen at present
• International Brain Research Organization – since 1990
• European Society of Neurology – since 1991
• Acute disorders of brain blood circulation, intensive care, sleep disorders
• More than 200 articles, 12 monographs.