Christmas in the Hospital

The Romanian Hemophilia Association-Covasna County Section was invited yesterday to decorate a Christmas tree in the "Fogolyán Kristóf" Covasna County Hospital.

We were very happy to help  to ease somehow the patients' pain, and it was a good opportunity to pay back  the "Fogolyán Kristóf" Hospital's care.

NMO Advocacy in Action - London / UK

For two days London became the host of a very interesting and important workshop on hemophilia.
The theme was on "data collection and use in a challenging economic environment".
The participants were from Europe. There were hemophilia association representatives from Albania, Czech Republic, Latvia, Portugal, Serbia, Switzerland, United Kingdom and Romania (Sebastian Maranga, Laszlo Kiss). 

The program:
-Day One (December 11)
1. Introduction and opening remarks / by Mark Skinner and Aris Hashim
2. Opportunities and Threats / by Gordon Clarke and Antonio Almeida
3. Using Data for Advocacy / by Gordon Clarke and Antonio Almeida 
4. Case Studies
5. Economics and Hemophilia / by Mark Skinner and Claudia Black 
6.Importance of Collaborating with Clinicians / by Paul Giangrande
-Day Two (December 12)
7. Sharing and Planning Country Advocacy Strategies / by Aris Hashim
8. Advancing and Implementing your Advocacy Strategy / by Gordon Clarke and Antonio Almeida
9. Way Forward and Conclusion  / by Gordon Clarke and Mark Skinner

The program at a glance looks very simple: they will talk and we shall listen, and maybe at the end we shall tell our "bright" remarks. In fact they put us to work! After or during each presentation we had to work and give individual or team feedback. No one was left to stay in his/her ivory tower. In this way we learned a lot, not only from the presenter, but from each other too. 

During the workshop we saw that there are problems everywhere: lack of comprehensive treatment centers (Portugal), association strengthening (Switzerland), home treatment (Serbia), improve hemophilia treatment (Albania), to buy cheaper but better factors (Latvia), purchase products that going to developed (U.K.), keep the level of hemophilia treatment and improve the activity of the treatment centers (Czech Republic). Therefore each of us wanted to learn more about the hemophilia advocacy.
So, the aim of the workshop was, just what we needed:
1. to provide both qualitative and quantitative information on how to collect, use and present data in order to advocate for of standards of care
2. to alert participants to potentially damaging impacts of the global economic recession facing hemophilia community in Western and Central Europe
3. to support participants to enhance advocacy campaigns at national and international levels within Europe 4. to assist in further strengthening advocacy knowledge and skills
I think that the WFH representatives achieved their goal. With their support each NMO representative was able to create a skeleton of advocacy or lobbying strategy for the near future. Now it's up to us how to develop and apply it!

We have to thank you to WFH and to the presenters for their professionalism. It was a real interactive workshop. We simply love it!
Thank you to Baxter too, who made this event possible.   

The 20th Anniversary Celebration of the Hungarian Haemophilia Society

The board members of the Romanian Haemophilia Association and our local branch president were invited on the 4 December to celebrate with our twinning partner their 20th Anniversary Cellebration.
The speakers were:

Dr. Eszter Miskovits Director of the National Blood Service of Hungary
Tamás Pelyhe Founder President of the Hungarian Haemophilia Society between
1990-2000
Zoltán Molnár President of the Hungarian Haemophilia Society between 2002-2009
Dr. László Kalász Former Medical Vice-President of the Hungarian Haemophilia Society
between 1997-1999
Dr. Gábor Varga President of the Hungarian Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
Thomas Sannié Vice-President of the French Haemophilia Society
Board Member of the World Federation of Hemophilia
Daniel Andrei President of the Romanian Haemophilia Association
Dr. Delia Mihailov, Medical Vice-President of the Romanian Haemophilia Association
Mihály Trucki President of the Covasna Section of the Romanian Haemophilia
Association
Dr. Gabriele Calizzani President of the Italian Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
Alain Weill Vice-President of the French Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
During the celebration it was presented Dr. Peter Jones' book ''Living with Haemophilia'' translated in Hungarian language by the Hungarian Haemophilia Society.
In the afternoon it was organized a Santa Claus party for the Hungarian children who suffer of haemophilia.

On 6th of December it was organized the Twinning Meeting between the Hungarian Haemophilia Society and Romanian Hemophilia Association. Here we discuss about our actions which we will organize together in 2011.
Our friends from France and Italy were invited too. They helped us with many suggestions.

Family Day

On 09.10.2010 we organized the Family Day of our local association. It was a good opportunity to learn, to know better each other, to make new friendships, to play. It was good to feel that we are not alone. We think that this was a good chance to strenghten our association.
Thank you to BIOTEST pharmaceutical company and Red Cross - Sfantu Gheorghe for their support!

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