CRITICAL MASS IN ST. GEORGE CITY

There were about 690 persons. Our friend Astilean Eduard was there too, and he wears a t-shirt with hemophilia logo. We appreciate wery much his effort.

On 15Th of May it was organized an Iron Man MTB competition at Oradea. The competitors had to do 275km off-road in 22 hours. The highest peak has got 1198m. There were 33 teams, and finished only 18 the competition!
Two sportsman, our friends, Jakab Tibor and Astilean Eduard were decided to take part in the competition in the name of hemophilia. They wanted to help us, and say to the ordinary people that with a good treatment, the hemophilia patients can do everything, even sports. The best example is Alex Dowset who trains and competes with Lance Armstrong's Trek-Livestrong team and he suffers from severe hemophilia!

Jakab Tibor and Astilean Eduard helped me before too. They were my trainers, offered me technical support and accompanied me during the trip, when I decided to do the campaign for hemophilia and go to Turkey.
Tibi and Edy finished the competition on the 4th position.
Thank you guys for your generous support!
You can read the interview with them:
before http://www.covasnamedia.ro/beta/?p=8584
after http://www.covasnamedia.ro/beta/?p=8719
About the competition:
in Romanian http://www.mountainriders.ro/ironbikeoradea/ibo2010_ro.html
in Hungarian http://www.mountainriders.ro/ironbikeoradea/ibo2010_hu.html

HEMOPHILIA MEETING

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Yesterday our local section organized the annual meeting. It was a good opportunity to see everybody again, not only separately. The staff (Trucky Mihály and Kiss László) presented the annual report. We had a good season. We can say that our local hemophilia association was very active and hopefully we can do it even better in the next "hemophilia year" (May 2010-May 2011, we keep the local annual meeting always in May).
Our special guest was Dr. Péter Margit from the Fogolyán Kristóf Covasna County Hospital. She is the chief of the children section. We had a good and open discussion with her.
Our association received new members too: They are Dima Tihamér and Jobb Levente.
Thank you to the local Red Cross and Mr. Pap Adolf for their help. Thank you to Serge and Lucy Vincent for their help.

World Hemophilia Day in Romania

On April the 10Th our national association celebrated the World Hemophilia Day in Timisoara.
It was a really good time to celebrate. Prof. Margit Serban announced during the ceremony, that we won an important battle, our National Health Ministry raised up our factor supply almost 65%!
We had special guests:
Catherine Hudon, the Regional Program Manager of the World Federation of Hemophilia;
Varga Gábor, the President of the Hungarian Haemophilia Society;
and Nicolae Oniga the President of the other Romanian hemophilia association, the Romanian National Hemophilia Association.
Ducu Bertzi, the famous folk singer was singing for us.
This day was important for us not only for celebration, but for the twinning assesment visit done by Catherine Hudon and Varga Gábor.
We hope that the application of the Hungarian Haemophilia Society and the Romanian Haemophilia Association will be approved by the WFH. We think that this year will be a real turning point for our future.

NEW STEPS - NEW HOPES

On 6th of March 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 haemophliia 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. We hope that this will be the first step for our twinning. We hope that the WFH will support us in our future actions.

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

Our local association was represented by : Mr. Trucki Mihály, Mr. Trucki Levente and Mr. Kiss László

AN INTERVIEW WITH ANDREI DANIEL

He presents the bad situation of Romanian hemophilia. Thank you Prima TV for the news!
Here is the link: http://www.primatv.ro/stiri-focus/victimele-crizei.html

ANDREI DANIEL IS ELECTED!

Yesterday we had the general elections for our national association.
Mr. Andrei Daniel became our new president.
Congratulations!