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!

New Campaign for Hemophilia!

The Romanian Hemophilia Association started a new campaign. Hemophilia patients write letters about their needs to the Ministry of Health. Each day- other patient.
Last week it was our local association's turn.
We know that we are in a deep political and economical crisis: we don't have minister, very soon we shall have general elections ..... but we have to fight! This campaign will be a long term action.

Fiziokinetotherapy, Practical Course of Rehabilitation at Buziaş

The course was organized on 05-06 of October, at the Clinical Medical Center CristianSerban of Evaluation and Rehabilitation for Children and Adolescent with Type 1 Diabetes Mellitus and Hemophilia, Buzias.
From the Dutch side Prof. Dr. PJM Helders, W. Groen PhD and Dr. J. van der Net and from the Romanian side Prof. Dr. Margit Şerban were the doctors who kept this course. The participants were doctors, therapists and hemophilic patients.

The aim of the course was about:

1. to assess the patient's perception of his functional ability by using self rated instruments
   
2. to objectively quantify how the individual is able to perform
   
3. to use performance based instruments that usually measure strenght, joint mobility, and other physical traits that are the main performance limiting factors
   

The course gives us the opportunity to see again our friends who suffer of hemophilia and the doctors, who take care of us.

The 22nd Annual European Haemophilia Consortium Conference

22nd Annual European Haemophilia Consortium Conference 2009 was took place in Vilnius on 11-13th of September.

Here are the most important moments, the material is taken from the Conference's official site (http://www.ehc2009.eu/index.php?id=74):

„The objective of the conference is to exchange information, learn about the news and explain away how patient organizations are doing and what we could do for assistance among ourselves", - the aim of the meeting was defined by Mr. Ad C. Veldhuizen, the president of the European Haemophilia Consortium (EHC). The conference was attended by more than 260 representatives from Europe - the leaders of haemophilia patient organizations, medical specialists, the representatives of governmental institutions.

Mrs. Nora Ribokienė, the vice-minister of health, welcomed the conference attendees and pronounced the opening speech. Ms. Neringa Gailiūtė, a doctor of Haemophilia Centre of Klaipėda Seamen‘s Hospital gave a presentation on the situation of haemophilia patients in Lithuania. Recently there are 146 patients in Lithuania diagnosed with haemophilia, 51 children among them. During the last 20 years the situation of haemophilia patients has changed considerably - up to 1990, the patients were mostly treated by direct blood transfusion after bursts of bleeding, and now - with concentrates of blood coagulation factor. However, compared to other European countries as regards the availability of medications, Lithuania is lagging behind nearly 3 times. The results of such treatment could be apparently observed among the attendees of the conference, i.e. the majority of haemophilia patients from Lithuania and other countries of the Eastern Europe are limping, their joints being affected by internal bleeding. The situation of haemophilia patients from other European countries giving more attention to haemophilia is far better.

Therefore one of the key conference subjects was preventive treatment of haemophilia patients. Such treatment is rather expensive (haemophilia is among other ten diseases which require the most expensive treatment), but the result is obvious - people who can lead normal life and be able to work. In most countries within the European Union, the prophylactic treatment is applied to children haemophilia patients. The results of such treatment was illustrated by photos: playing children - healthy ones and haemophilia patients - but in fact it‘s impossible to distinguish between healthy and sick kids. Since 2008, the program of prophylactic treatment for all children was started in Poland. According to Bogdan Gajewski, the representative of haemophilia patients of Poland, they wrote 400 letters per year to national and governmental institutions and journalists in order to attain their goal.

„The representatives of haemophilia patient organizations must lead negotiations with their governments for bigger sponsorship as concerns prophylactic treatment and treatment with recombinant blood coagulation factors. The key reasons in such negotiations involve: the greater investments into treatment mean lower investments into expensive joint surgeries, sickness benefits for disabled, etc. in the future", - Mr. Ad C. Veldhuizen, the president of EHC, advised.

The second important subject at the conference was evaluation of economical and health technologies. By giving corresponding statistical data, Mr. Brian O‘Mahony, the former president of EHC, has proved that investments into treatment of haemophilia patients is worth while indeed. For the meantime, such research has not been carried out in Lithuania.

„We believe that this event will assist in catching the attention on the situation of haemophilia patients in Lithuania and will expedite problem solving - applying of prophylactic treatment to children; treatment of children and adult haemophilia patients with recombinant coagulation factors after hepatitis C and B cure, to ensure conditions for adult haemophilia patients for compensated in-patient rehabilitation", - Mr. Marius Pigulevičius, the president of the Association of Haemophilia Patients of Lithuania, said.

For me, who come from a country, where the factor supply is under 0,3 UI/capita, it was quite a big ,,stroke" that there were discutions about the adult profilaxia, and we don't have even on demand treatment.

The conference was organized by the European Haemophilia Consortium, in collaboration with the Association of Haemophilia Patients of Lithuania.

Vilnius is beautiful. Here is a short presentation about Lithuania:
http://www.vilnius-convention.lt/index.php/en/61692/

Don't forget! The 23th Annual European Haemophilia Consortium Conference will be held in Hungary in 2011!

RAY OF HOPE

"Ray of Hope", is a camp for the Romanian children with hemophilia organized by Mrs. Adriana Henderson and S.T.A.R. Children Relief Foundation.
This year, in July, the camp was at Ighiu, Alba County, Romania.
Please watch the interview about the event.


Thank you Adriana and S.T.A.R. Children Relief Foundation for your concern toward our children!
The interview was made by Realitatea TV Alba Iulia (www.realitateaalba.ro.).