United in achievement - Treatment for all!

The two sister haemophilia associations cellebrated by working the World Haemophilia Day! On the 15th of April there was held a symposium in Bucharest.

Here is the program:

10:30 – 11:00 Press conference

11:00 – 11:10 Welcome and introduction of meeting - Daniel Andrei, President of Romanian

Haemophilia Association, haemophilia patient

11:10 – 11:20 Message from Romanian Health Minister – Dr. Andrei Kozma, Personal Adviser of Romanian Health Minister

11:20 – 11:35 Medical care network of hemophilia patients in Romania – Prof. Univ. Dr. Margit Serban, Haematologist, Member of Sciences Medical Academy, Honoured President of

Romanian Hemophilia Association, Head of Clinical Pediatric Hospital “Louis Turcanu”

Timisoara.

11:35 – 11:50 Development of hemophilia care and the role of the patient organization in

development of haemophilia care in Hungary – Dr. Gabor Varga, President of the

Hungarian Haemophilia Society; Steering Committee Member of the European

Haemophilia Consortium, hemophilia patient

11:50 – 12:05 Paediatric hemophilia care inside of Hemophilia Treatment Center – Margit Rigo, Nurse specialized in haemophilia care

12:05 – 12:20 Hemophilia management – past and present – Dr. Valentina Uscătescu,

Haematologist, Fundeni Clinical Institute, Bucharest, board member of Romanian

Hemophilia Association

12:20 – 12:35 The aspects of medical economy in hemophilia – Dr. Delia Mihailov, Vicepresident of Romanian Hemophilia Association, Conf.Univ. - University of Medicine and Farmacy “Victor Babes”, Timisoara.

12:35 – 12:50 How should physiotherapy improve the quality life of haemophiliacs – Andrea Nagy, Physiotherapist

12:50 – 13:05 Presentation of rehabilitation program at Medical Center “Cristian Serban”,

Buzias – Dr. Alina Lăcătusu

13:05 – 13:15 The voice of a two patients – Nicu Mustăţea and Peter Nagy, Romanian and Hungarian perspective

We are at the beggining of the of the twinning, but after each meeting is good to talk about results too:

1. Our meeting prooved that there are no borders for haemophilia. The Hungarian Haemophilia Society and the Romanian Haemphilia Association became sister associations.

2.We became friends.  

 3. Dr. Andrei Kozma, the personal adviser of the Romanian Health Minister, attended the meeting. We told to him our problems and our aims. We also showed to him, that haemophilia pacients who live in two countries with simmilar economies live differently and this is innacceptable. Dr. Kozma promised that he will present everything to the Health Minister. 

4. The media was there too. They heard and transmitted our message to the govenment and to the ordinary people.  

5. The pharmaceutical companies attended our symposium. They are the witnesses of our start. 

 

New Steps, New Hopes

On 6th of March 2010, the Hungarian Hemophilia Society and the Romanian Hemophilia Association were beginning a new chapter in their relationship. They met together at a symposium in Budapest at St. Laszlo Hospital.

Here is the program:

10.00-10.15 Dr. Gábor Varga - Importance of representation of haemophilia patients’ interests
President of the Hungarian Haemophilia Society, Member of the Steering Committee of the European Haemophilia Consortium, haemophilia patient

10.15-10.40 Andrei Daniel - Haemophilia snapshot in Romania and possible way of development
President of the Romanian Haemophilia Association, haemophilia patient

10.40-11.05 Prof. Dr. Klára Vezendi - Haemophilia care in Hungary: past and present
Haematologist, Head of Transfusiology Department of Medical University in Szeged, Member of the Haematology and Transfusiology Board in Hungary

11.05-11.30 Prof. Dr. Margit Serban - Registration of haemopilia patients in Romania
Haematologist, Honoured President of the Romanian Haemophilia Association, Head of the III. Paediatric University Clinic in Timişoara, Director of Bone Marrow Transplant Center Timisoara;Member of the Romanian Academy of Scientists

11.30-11.55 Dr. Rita Jáger - Role of blood bank service network in Hungarian haemophlia care 
head haematologist, Director of the Blood Bank Service in Szombathely, head of the haemophilia care in the Western region of Hungary

11.55-12.15 Caffee break

12.15-12.40 Prof. Dr. Maria-Despina Baghiu - Paediatric hemophilia care in Transylvania: needs and reality
haematologist, Director of the I. Paediatrics Clinic in Târgu Mureş

12.40-13.05 Dr. Zsuzsanna Szélessy - Haemophilia registry in Hungary
head haematologist in State Health Center, Budapest, Member of Supervisory Board of Hungarian Haemophilia Society

13.05-13.30 Dr. Valentina Uscatescu – The institutional structure of haemophilia care in Romania
head haematologist, Institutul Clinic Fundeni, Bucharest, member of the board of the Romanian Haemophilia Association

13.30-13.45 Dr. habil. Imre Bodó - Severe type 3 von Willebrand disease in Carpathian Basin
head haematologist in Szent László Hospital, Budapest, Medical Vice-President of the Hungarian Haemophilia Society

13.45-14.00 Discussion

It was a very fruitful meeting. This was the first step for our twinning.

Thank you for the sponsors: Octapharma, Biotest and Nemzeti Civil Alapprogram.