Romanian Hemophilia Association

Christmas in the Hospital

2011-12-21T01:21:00.000-08:00

It becomes a tradition on Christmas to visit the Fogolyán Kristóf Covasna County Hospital.

We decorated the Christmas tree for the patients and doctors.
It's such a good feeling to give!
Merry Christmas and a Happy New Year!

Family Day

2011-11-03T12:30:00.000-07:00

On 22.10.2011 was organized the Family Day of our local association.
Here is the program:
1. Mr. Trucky Mihály -local president of RHA- was greeting the participants
2. Mr. Kiss László -local secretary of RHA- presented the activity of our local and national association
3. Mr. Bedő József -Local Red Cross volunteer- presented first aid methods
4. Free discussion
5. Family picnic

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 a lot to BIOTEST pharmaceutical company and Red Cross - Sfantu Gheorghe for their support!

Haemophilia Summer Camp at Balaton

2011-07-14T13:41:00.000-07:00

On 23.07.20011-06.08.2011, Zánka will be the home for the Hungarian haemophilia children and their guests from Romania.
Zánka is a youth center nearby the beautiful Balaton lake. Here the children will have many opportunities to play, learn and make friends.
Here is the videoclip about the 2010 camp activity. This camp was also organized in Zánka. There were 4 Romanian children too!

MHE Nyári Rehabilitációs Tábora 2010 Zánka from Péter nagy on Vimeo.

Run for Haemophilia

2011-07-14T13:22:00.000-07:00

Astilean Eduard and Nagy Attila were running for us on the hardest Romanian marathon. The Marathon7500 was organized between 7th and 10th of July 2011. The course followed a marked trail in Bucegi Mountains with a positive vertical gain of approx. 7500 meters.The marathon time limit was 50 hours for the Elite section and 26 hours for Hobby section. The total trail length was approx. 90 km for Elite section and approx. 45 km for Hobby and Companies sections.

Our friends finished at the 9th place of 40 teams!
They said that they run not oly to compete. They did this marathon for those who suffer and die because of haemophilia.
Here you can read the article, which appeared in our local newspaper:
http://www.covasnamedia.ro/beta/?p=20596

World Health Day – 7 April 2011

2011-04-10T07:56:00.000-07:00

The World Health Day our local organization celebrated together with other health organizations in the Queen Elizabeth's Park, St. George City.
We were discussing with the people who visited our stands and share to them brochures.
It was a good opportunity to be known by the ordinary people and share with them our problems.
Sorry, no photos aviable! I have formatted accidentaly my camera.

Christmas in the Hospital

2010-12-24T04:38:00.000-08:00

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

2010-12-17T02:51:00.000-08:00

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

2010-12-06T13:57:00.000-08:00

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

2010-10-10T07:49:00.000-07:00

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

2010-06-01T12:16:00.000-07:00

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.

2010-05-21T02:50:00.001-07:00

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

2010-05-09T11:28:00.000-07:00

Create your own video slideshow at animoto.com.

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

2010-04-18T11:07:00.000-07:00

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

2010-03-10T09:21:00.000-08:00

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

2010-03-03T15:41:00.000-08:00

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!

2009-11-29T12:56:00.000-08:00

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

New Campaign for Hemophilia!

2009-11-01T05:52:00.000-08:00

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

2009-10-24T10:56:00.000-07:00

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:

to assess the patient's perception of his functional ability by using self rated instruments
to objectively quantify how the individual is able to perform
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

2009-10-24T07:21:00.000-07:00

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

2009-08-11T09:45:00.000-07:00

"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.).

NEW CHANGES FOR THE NGOS IN ROMANIA

2009-06-23T03:46:00.000-07:00

On 19.06.09 our local organization participated at a seminar organized by Asociaţia Pro Democraţia in Sfântu Gheorghe. We were discussing about the 2% income-tax. Our guvernamental officials wants to simplify it. We all agreed that the modifications offered by them are not quite good because the small, regional NGOs will be the big loosers of this new law.

Irina Bujder, the delegate of Pro Democraţia collects our suggestions. She will send them, together with the suggestions of the other NGOs from other counties, to our governamental officials.

Braşov

2009-06-01T07:26:00.000-07:00

On 30 of May we had an invitation to Braşov.
I went with Andrei Daniel, the vice president of the Romanian Hemophilia Association, to participate to a very special event.
The hemophilia patients of Braşov County established their local association!
They elected their staff.

Their first president is Mr. Lungu Ion, who is well known as one of the best volunteers in that region.
I'm very happy for them. I hope that if we shall be more and more, so we can change the health system in Romania.

LOOKING FOR NEW STRATEGIES

2009-05-27T03:30:00.000-07:00

On 23th of May, our local organization together with the national association organized a meeting for all the regional organization's staff an important meeting.
We had to decide about, how to continue our actions in the future. It is obvious that we can't continue in the same way, because the money for the factor supply was reduced drastically.
At the end we made the conclusions and made schedule for some actions, which will be more radical than we did before.
We had special guests too:

Dr. Varga Gábor, President of the Hungarian Hemophilia Society

Prof. Univ. Dr. Baghiu Maria-Despina , Târgu Mureş Hospital
Dr. Szélessy Zsuzsanna, Hungarian Hemophilia Center
Radnóti Balázs, member of the Hungarian Hemophilia Society
The sponsor of of the event was the Novo Nordisk.
Here is our press communication in Romanian:
ŞAPTE TINERI CARE PUTEAU TRĂI
In acest weekend, in 23 mai, Asociata Romana de Hemofilie a organizat intalnirea reprezentantilor asociatiei din cadrul tuturor filialelor ARH, unde au discutat problemele cu care se confrunta persoanele cu hemofilie din Romani la ora actuala. La aceasta intalnire au participat si reprezentantii Asociatiei Maghiare de Hemofilie care ne-au prezentat asistenta acordata pacientilor lor, ceea ce a demonstrat o diferenta uriasa de tratament si abordare asupra problematicii pacientilor cu hemofilie.
România se situază printre ţările lumii a treia în tratarea ecestei boli. Numai în anul trecut 7 tineri au murit din cauza acestei boli.
Tatal unui baietel cu hemofilie, Dl Kiss Laszlo, a prezentat perspectivele sumbre ale părinţilor cu copii care suferă de hemofilie şi a cerut sprijinul asociaţiei pentru a salva aceste fiinţe tinere de o moarte prematură.
Adultii cu hemofilie, forma severa, din Romania au deficiente articulare si motorii, dezvoltând dizabilităţi permanente, ceea ce le face dificilă inserarea şcolară, profesională şi întemeierea unei familii proprii. Acest lucru nu trebuie sa se mai repete, copiii de astăzi nu trebuie să devină persoanele cu handicap de mâine spune Daniel Andrei, vicepresedintele Asociatiei Romane de hemofilie.
Pacientii, medicii, parintii si sustinatorii prezenti au prezentat faptul ca asistenţa medicală a persoanelor cu hemofilie se confruntă cu deficienţe serioase:
aport bugetar national extrem de mic si sume reduse repartizate la nivel judetean, care nu acoperă necesarul real tradus prin insuficienta tratamentului acordat pacientilor cu hemofilie in Romania
accesul inegal la tratament pe teritoriul tarii (regiuni in care acesta lipseste iar in alte centre exista)
discrepante majore in ceea ce priveste repartizarea bugetara
tratamentul ``on demand`` - la cerere - (doar al accidentelor hemoragice) este neadecvat si administrat tardiv
folosirea produselor native din plasma, inactivate viral
asistenta pacientilor cu inhibitori deficitara
speranta de viata redusa
De aceea, s-a subliniat faptul ca In spatele fiecarei persoane cu hemofilie este nevoie de o echipa de sprijin si suport de natura medicala, sociala si psihologica.
Asa cum anul acesta se marcheaza aniversarea a 20 de ani de celebrare a Zilei Mondiale a Hemofiliei, sub sloganul „Impreuna, ne pasa!”, aceasta intalnire a avut ca obiectiv evaluarea situatilei din tara si stabilirea prioritatilor, asa cum pacientii cu hemofilie le considera necesare pentru salvarea propriilor lor vieti.
Unele din cele mai urgente actiuni care trebuie adoptate de Romania din perspectiva pacientilor:
a) finalizarea registrului national de hemofilie si managementul acestuia
b) definirea unor actiuni de cooperare locala, regionala si nationala in tratarea hemofiliei
c) organizarea licitatiei nationale pentru achizitia de factor
d) asigurarea disponibilitatii produsele de factor VIII / IX si tratarii persoanelor cu inhibitori din Romania
e) dezvoltarea centrelor regionale de tratament care sa preia coordonarea, diagnosticarea, tratarea, recuperarea persoanelor cu hemofilie si a unitatilor sanitare din regiunea respectiva
f) elaborarea si punerea in practica a unui protocolul terapeutic pentru pacientii cu hemofilie si boala vonWillebrand
În finalul intalnirii, s-a adoptat o nouă strategie, mult mai radicală, care prevede actiuni de strada daca in urma demersurilor ARH nu se va intreprinde nimic in vederea imbunatatirii semnificative a asistentei pacientilor cu hemofilie din Romania.
Hemofilia este o boala genetica rara, ce afecteaza un numar estimativ de 1800 persoane in Romania si aproximativ 400.000 in lume.
Nicio persoana, bolnava de hemofilie, nu ar trebui sa traiasca in suferinta, durere, disabilitate sau cu perspectiva unei vieti mai scurte.
Cu tratament, o persoana bolnava de hemofilie se poate astepta la o viata normala, intr-un mod sanatos si cu putine restrictii.
Fara tratament, acestea continua sa infrunte durerea, statea de dizabilitate, izolarea si decesul prematur. Majoritatea persoanelor cu hemofilie, care nu au primit tratament, prezinta deformari articulare, iar in cazul unui tratament neadecvat, au fost infectati cu virusul hepatic B, C sau cu virusul HIV.

Daniel Andrei Vicepresedinte ARH
Gheorghe Marcu Secretar
Mobil O745 035565

NEW HEMOPHILIA CONFERENCE

2009-05-13T13:23:00.000-07:00

On 23 of May we organize, together with the our national association a conference. Here is the agenda. Sorry, it is in Romanian!

Optimizarea strategiei Asociatiei Romane de Hemofilie si eficientizarea demersurilor in privinta alocarii unui tratament optim persoanelor cu hemofilie

23 MAI 2009
Casa de Cultură Orăşenească
Str. Kossuth Lajos, nr. 10
Localitatea: Sfântu Gheorghe

09:00 – 09:15 Bine ati venit/Introducere
Presedinte, Asociatia Romana de Hemofilie
Presedintele Asociatiei Maghiare de Hemofilie
09:15 – 09: 35 Tratamentul pentru hemofilie in Romania si situatia actuala europeana
Conf. Univ. Dr. Daniel Lighezan, Presedinte, Asociatia Romana de Hemofilie
09:35 – 09:55 Tratamentul pentru hemofilie dinUngaria
Dr. Gábor Varga, Preşedinte, Asociaţia Maghiara de Hemofilie
09:55 – 10:15 Registrul Maghiar de Hemofilie
Dr. Szélessy Zsuzsanna, Centrul Naţional de Hemofilie, Budapesta
10:15 – 10:35 Ingrijirea hemofiliei in centrul de tratament Tg-Mures
Prof. Univ. Dr. Baghiu Maria-Despina
10:55 – 11:15 Pauză
11:15 – 11:35 Donează şi tu sânge! - Campania Asociaţiei Maghiare de Hemofilie
Radnóti Balázs, membru AMH
11:35 – 11:55 Asociatia Romana de Hemofilie – prezentare, activitati,
obiective
Gheorghe Marcu, Secretar, Asociatia Romana de Hemofilie
11:55 – 12:15 Perspectiva parintilor privind tratarea hemofiliei
Kiss Laszlo – Asociatia Romana de Hemofilie
12:15 – 12:35 Importanta unei retele functionale pentru hemofilie
Daniel ANDREI, Vicepresedinte, Asociatia Romana de Hemofilie
13:00 – 14:00 Prânzul
14:00 – Discutii în privinţa strategiei ARH
17:00 – Concluzii

WORLD HEMOPHILIA DAY

2009-04-17T02:40:00.000-07:00

It is a very important event in our life. We celebrated it in Bucureşti together with people coming from all over Romania. This day it means a lot of happyness, because we are together, but also mourning because 7 people from our community dyed last year because of bleeding.

The perspectives are not good: the factor supply will go down from 0.5 I.U./capita to 0.3 I.U./capita! And we know how much was the 0.5 I.U./capita: almost nothing!
I think we have to change our strategy. That's why I was very happy that the Asociaţia Naţională a Hemofilicilor din România and the Asociaţia Română de Hemofilie, the two sister associations, were celebrating together.
I hope that there will be further collaborations too, because

TOGETHER, WE CARE!

The celebration was organized on 14.04.2009.

HEMOPHILIA CONQUERS MT. PIATRA CRAIULUI

2009-04-16T12:49:00.000-07:00

On Sunday (12.04.09) I decided with my friend, Varga Gábor, to visit Prăpăstiile Zărneştului which is a canyon in Mt. Piatra Craiului. You can go very close to the canyon by car. So It wasn’t a problem for Gábor to visit it even if he suffers of severe hemophilia. We enjoyed the trip very much, we did a lot of photos, but when reach the end of the canyon -surprise!- Gábor starts to climb a path which goes to Curmatura Cabin. The Mt. Piatra Craiului is not recommended for ordinary men, but Gábor isn't’ an ordinary man either. It’s true: we stopped a lot for rest, and we reached only the cabin (1470m), but I think we won!
Using Jack Finn’s saying:’’bloody can do it’’!

Photos: http://picasaweb.google.hu/kkisslaci/Kiralyko12042009#
More info about Mt. Piatra Craiului:
http://www.cabana-curmatura.ro/
http://www.pcrai.ro/engleza/parcul_istoric.html

Christmas

2008-12-13T02:11:00.000-08:00

Yesterday I went to donate blood.

It was the first time, so I was very scared, and they took about 450 ml, but after that I was feeling great!

I was thinking that probably this will help a life.

It's Christmas. Please think to the others, who are in need!

Photos: http://picasaweb.google.hu/kkisslaci/Blood?authkey=ibq_El8yB2c#

National Meeting in Buzias

2008-12-01T10:14:00.000-08:00

On 29th of November was organized the meeting of our Romanian Hemophilia Association. Our host was the Clinical Medical Center Cristian Serban of Evaluation and Rehabilitation for Children and Adolescent with Type 1 Diabetes Mellitus and Hemophilia.

It was a national meeting, so people come from every corner of the country.

In the beginning Mr. Andrei Daniel our vice-president presents all the activities of the national association. It was a very rich day. There were many campaigns, conferences and found rising activities.

Then Mrs. Prof. Dr. Margit Serban tells us about her impressions toward our association. She retired from the presidency a year ago.
She said that we are on a right path, but she warns about the possible dangers too.

Then there was a free discussion about our problems and future projects.
I am very happy that everybody approved the twinning project with the Hungarian Hemophilia Society. I know that we shall have a lot of work but I think that this will be a new possibility to fight for those who suffer of hemophilia.

At the end I presented the Help for Hemophilia campaign and its results.

Before we went home, everybody agreed that 2008 it was one of our best years of activity.
Photos from the meeting and fom my travel: http://picasaweb.google.hu/kkisslaci/Buziasnov29?authkey=RbaTgr-lmJI#

Covasna County Hemophilia Meeting

2008-11-22T02:55:00.000-08:00

On 9th of November, our local association organized a meeting for it's members.

We were very happy to meet each other again because we didn't have the opportunity to talk since 17th of Mai, when we started the campaign.
At the beginning of our meeting I presented the campaign and it's results.

Then we were discussing about our future projects. We would like to do a twinning with the Hungarian Haemophilia Society. We are thinking to be a bridge between the two national associations: the Romanian and the Hungarian.

We have other projects too, but I shall write about that later.

Then we had a discussion about the factor supply. We have problems, but we shall see more clear when we participate in December at our National Conference.
We were very happy to have guests between us. They went from Brasov County. They want to organize their local association. They were here to learn from our experience.

So, things are going forward!

Home

2008-06-14T11:36:00.000-07:00

I’m at home again. Now, when I look backward on my project, I think that it worth the effort.
From now on, no Ministry Of Health from Romania can dare to say that the hemophilia patients have no problems.
From now on, we are not numbers writen on a paper and lost somewhere in a case.
From today we are truly existing!
You can find the interviews and stuff of the press conferences:

in Romanian:
http://www.libertatea.ro/index.php?section=articole&screen=stire&sid=195180

http://www.sanatate.eu/stiri/203?task=view

http://stiri.itbox.ro/stiri-online/sanatate/bolnavii-de-hemofilie-cer-sprijin-din-partea-statului.html

http://www.sanatateatv.ro/index.php?actiune=read&id=1003

http://www.topmedici.ro/index2.php?option=com_content&do_pdf=1&id=1641

http://www.apropo.ro/cotidian/social/hemofilia-distruge-copilaria-2705083

http://www.telegrafonline.ro/1211144400/articol/54390/tratarea_bolnavilor_hemofilici_ca_si_inexistenta_in_romania.html

http://forum.transilvaniaexpres.ro/viewtopic.php?p=3378&sid=f8dcbb4d44984311f5dcfc18a46fe101

http://www.gandul.info/societatea/80-dintre-hemofilici-sunt-infectati-cu-hepatita-din-cauza-tratamentului-primitiv-video.html?3932;2648252

http://www.stirilocale.ro/Barbatul_plecat_pe_bicicleta_la_Istanbul_pentru_a_atrage_atentia_asupra_hemofiliei_a_revenit_in_tara_IDN504273.html

http://stiri.acasa.ro/articole/societate/80-dintre-hemofilici-sunt-infectati-cu-hepatita-din-cauza-tratamentului-primitiv

http://realitateacovasneana.ro/news/news.php?item.67.5

http://www.telegrafonline.ro/pdf/16cd98984d7dd5825c2bfd9b8ec9fd0f.pdf

http://www.presaonline.com/stire/barbatul-plecat-pe-bicicleta-la-istanbul-pentru-a-atrage-atentia-asupra-hemofiliei-a-revenit-in-tara,287029.html

http://www.evenimentulzilei.ro/articole/detalii-articol/803817/O-mie-de-kilometri-pe-bicicleta-pentru-fiul-hemofilic/

http://www.romedic.ro/stiri-medicale/Stiri_interne_0568/Cu_bicicleta_la_Istanbul,_in_sprijinul_bolnavilor_de_hemofilie_06204.html

http://www.stiripescurt.ro/stiri/o-mie-de-kilometri-pe-bicicleta-pentru-fiul-hemofilic/42132.html

http://cultural.srr.ro/arhiva/arhiva3.shtml?station=2&year=2008&month=5&day=19

http://evz.ro/articole/detalii-articol/2972/Baiatul-care-nu-are-voie-sa-se-joace/

http://www.alaturidevoi.ro/ro/php/afis_articol.php?id=1356&afiseaza=da

http://realitateacovasneana.ro/news/print.php?news.427

http://www.ziuausa.com/display.php?id=8807&data=2008-05-21

http://www.9am.ro/stiri-revista-presei/a/92682/a

http://www.brasovultau.ro/index.php?pag=nw&id=8118&p=un-brasovean-va-parcurge-1000-de-km-pe-bicicleta-pentru-a-protesta-impotriva-hemofiliei-video.html

http://www.agenda.ro/images/editions/6/631_6267.pdf

http://www.radiomures.ro/ro/stiri/stiri.php?year=2008&month=05&day=20

http://www.sanatateatv.ro/?actiune=read&id=862

http://www.medik.ro/info-medical/Un_tratament_mai_bun_pentru_hemofilici!.php

http://www.buletindestiri.info/tratarea-bolnavilor-hemofilici-ca-si-inexistenta-in-romania/

http://www.stirilocale.ro/covasna/O_mie_de_kilometri_pe_biciclet_pentru_fiul_hemofilic_IDN478965.html

http://www.ziare.com/Cu_bicicleta_pana_in_Turcia_ca_sa_si_salveze_fiul-212902.html

Hungarian:
http://www.szekelyhirmondo.ro/article.php/Kisfiáért_kerekezik_Isztambulig/6808/

http://pluszportal.ro/web/index.php?option=com_content&task=view&id=1925&Itemid=2

http://www.3szek.ro/modules.php?name=3szek&id=6519

http://www.erdely.ma/jotekonysag.php?id=36763

http://umsz.manna.ro/tarsadalom/bringan_a_hemofilia_kezeleseert_2008_05_20.html

http://www.erdelyfm.ro/hirarchivum.php?nap=2008-05-19

http://www.erdely.ma/eletmod.php?id=36710

http://www.szekelyhirmondo.ro/article.php/Remény-a-hemofíliásoknak/7604/

Turkish:

http://www.yesilyurtgazetesi.com/detay.asp?hid=4406

http://www.haber7.com/haber.php?haber_id=322330

http://haber.mynet.com/detay/saglik/Kanamaya-dur-demek-icin-geliyorlar-/26Mayis2008/X1211790499937

http://www.haberler.com/istanbul/

http://www.arabul.com/haberana.aspx?id=411255&AspxAutoDetectCookieSupport=1

http://www.habersaglik.com/default.asp?Act=Dt&CatId=1&NwId=78651

http://www.ozgurhaber.com/hasta-oglu-icin-pedal-ceviriyo-2172491/

http://www.haberler.com/hemofili-hastasi-oglu-icin-pedal-cevirecek-haberi/

http://www.eczacidergisi.com/

http://www.trakyanethaber.com/yeni/haber.asp?id=11008

http://www.habervar.com/

http://www.cagdaskitap.netteyim.net/haber/Spor/hemofili_hastasi_oglu_icin_pedal_cevirecek-haberi-12270.html

http://www.gazeteint.com/news_detail.php?id=2521

http://haber.eglenceseli.com/5680/hemofili_hastasÄ±_oÄlu_iÃ§in_pedal_Ã§evirecek.html

http://www.sporveskor.com/arsiv.asp?katID=12&s=1

http://www.harbiforum.net/guncel-haberler/57883-hemofili-hastasi-oglu-icin-pedal-cevirecek.html

http://www.cagdaskitap.netteyim.net/haber/Spor/song%20dan_kartal%20a_mesaj_var-haberi-12248.html

http://www.haberler.com/romanyali-laszlo-kiss-oglu-icin-bisikletle-turkiye-haberi/

http://www.yesilyurtgazetesi.com/detay.asp?hid=4406

http://www.aksam.com.tr/haber.asp?a=119290,3

English:

http://www.kelleycom.com/blog/labels/Kiss%20Laszlo.html

http://www.wfh.org/2/docs/Publications/Hemophilia_World/HW_April2008_EN.pdf

Durusu-Istanbul

2008-05-31T11:13:00.000-07:00

Our Turkish friends come and accompanied us with their car on our last kms. We had an another surprise too: Turkish bikers were there for us before Istanbul! And when we arrived to the hotel..... the Turkish hemophiliacs were waiting and applauding us. It was very hard for me to keep my tears......

Thank you! Thank you for all!

Photos: http://picasaweb.google.com/kkisslaci/DurusuIstanbul

Special thanks for the sponsors:

Novo Nordisk
Orzan Spedt SRL
Biotest Hungary
Hemophilia Society of Turkey
Romanian Hemophilia Association
Hungarian Hemophilia Society
World Federation of Hemophilia
Red Cross Romania
Komenco SRL
Discgolf Austria
City Hall Sfantu Gheorghe
Terwa Romania SRL
Bike Kuckó Sfantu Gheorghe

Saray-Durusu-Karaburun

2008-05-31T10:58:00.000-07:00

It was the most windiest day of them all. We started our trip at 6 o clock in the morning. Strong headwind. We were riding with14-15 km/h! And somethıng unusual: it was cold all day!

At Karaburun we met again the Black Sea. Our accomodation was very close to the beach. I slept wıth the sound of the sea....

Photos:http://picasaweb.google.com/kkisslaci/SarayDurusu

Kirklareli-Saray

2008-05-31T10:42:00.000-07:00

Short but hard trip. Man, it s too hot here! On our way we met some bikers from Belgium. They did a trip around the Mediteranean Sea! It took about 2 years for them. We give to them our map of Bulgaria.

Photos: http://picasaweb.google.com/kkisslaci/KirklareliSaray

Malko Tarnovo-Kilklareli

2008-05-31T10:19:00.000-07:00

From the silence of the forests we entered in country which impressed me with it's vitality. The people are so friendly! Even the car drivers salute us as if we are old friends.

Photos: http://picasaweb.google.com/kkisslaci/MalkoTarnovoKirklareli

Prımorsko-Malko Tarnovo

2008-05-31T10:00:00.000-07:00

Forests-mountains-forests-mountains, I recommend this part of my trip to every biker. No cars, no men- just you and the nature. You can rest on the middle of the road, without any problem..... and the Veleka Valley is extraordinary! I noticed an interesting custom of the Bulgarians. They use the road indicators as targets for shooting.

More photos: http://picasaweb.google.com/kkisslaci/PrimorskoMalkoTarnovo

Burgas-Primorsko

2008-05-25T06:55:00.000-07:00

Another hot day. We stopped at Sozopol. A beautiful place. We drink and ate somethıng, then back to bikes again! In Prımorsko we find accomodatıon. Then I was swimming in the Black Sea. It was a bit cold, but good, Edy didn't entered in.

Varna-Burgas

2008-05-25T06:42:00.000-07:00

This day was the hardest of all untill now. We did 136 km! It was a very hot day with a very strong headwind. We had a lot of mountains to climb. At Banya we climbed up about 20 km. We arrived about 9 o'clock pm to Burgas. "Tired" is not the appropriate word for what I felt, but I saw beautiful places, Bulgaria is beautiful.

On our way we met Erhardt Krull, an interesting man, who went from Holland to Istanbul. He is 51 years old, but he is still very active.

In Burgas wewisited athe town after the accomodation. The population celebrated the Burgas' Days.

More photos on http://picasaweb.google.com/kkisslaci/VarnaBurgasPrimorsko

Sumen-Varna

2008-05-23T10:27:00.000-07:00

This was a relatively fast trip. We had backwind, but I m more and more tired. I feel these 600 km what I did. And today we had a very hot day, too hot for a "highlander". On our way we visited the "Stone Forest" from Varna. It was very beautiful, then we went on our bikes to Varna. We made our accomodation at a hotel. Then we we ate, visited the city and stayed on the beach. The Black Sea is cold, so I entered only to wash my leggs. Tomorrow we shall have an another hard day. We shall have to do about 120 km. Wow!!!!!!

Giurgiu-Sumen

2008-05-23T10:13:00.000-07:00

This day it was very hard . It was raining. We started very late, but I was very happy, because Edy from Sfantu Gheorghe came to accompany me.

Bucharest-Giurgiu

2008-05-23T10:01:00.000-07:00

This trip was very easy. Mostly because the bikers from Bucharest accompanied me. Their solidarity impressed me much. A Turkish TV took some interviews from us.

Bucharest

2008-05-23T09:51:00.000-07:00

In Bucharest we did the press conference. I think that was very good. Then we went to the Ministry of Health. They received us. they were very kind. We gave to them the petition. We shall see what will happen......

Pitesti-Bucharest

2008-05-20T11:04:00.000-07:00

The morning starts with storm and lightnings. At 9 o'clock the sky become cleaner.

The weather become warmer.

I had problem with the wind, the nightmare of each biker.

I had headwind, so I went with 12-15 km/h in a plain place! I was demoralized. Then after Titu I met with the bikers from Bucharest, who come to help me to enter in Bucharest.

Suddenly I had new strenght, new power.

Bogdan, Florin and Ionica I never forget your kindness!

More photos on: http://picasaweb.google.com/kkisslaci/PitestiBucuresti

Brasov -Pitesti

2008-05-20T07:08:00.000-07:00

I started the trip from the Piata Sfatului. The "cavalry'' accompanied me until Rucar. There were bikers from Sfantu Gheorghe and Brasov. Their support it means for me a lot. The mountains become less higher for me. I was very impressed that people who hasn't got anything in common with hemophilia, simply they wanted to help me! The weather was fine, and the mountains just beautiful! I was burned by the sun a bit.
More photos on: http://picasaweb.google.com/kkisslaci/BrasovPitesti

Sfantu Gheorghe-Brasov

2008-05-19T23:10:00.000-07:00

Finally I started my trip! At our local Red Cross we organized our press conference. There were from the local and national newspapers and from the Duna TV. Then I said goodbye to my family and my friends. Then off we goo! Many bikers from Sf Gheorghe accompanied me on the first part of the trip. Then they left me at the border of Covasna County.
I arrived without any problem to Brasov. I made my accomodation at my relatives. After that I had 2 interviews with TVR1 and with a local TV station, then I met with the local hemophilia patients at the Military Hospital. It was a very emotional moment. Then we talked about their specific local problems.......and they have a lot! On this photo you can see some hemophilia patients from Brasov.
You can see more pictures on:
http://picasaweb.google.com/kkisslaci/SfGheorgheBrasov

International Symposium in Sfantu Gheorghe

2008-05-01T04:59:00.000-07:00

On 29Th of March our Covasna County Association organized in collaboration with the Romanian Hemophilia Association and Hungarian Hemophilia Society an international symposium called The Medical Care of the Hemophilia Patients in Hungary and Romania.In the opening Dr. Valentina Uscatescu (Fundeni Hospital) presented The Advantages of the Recombinant Factor Therapythen Daniel Andrei vice-president from the Romanian H. Association and Molnar Zoltan president of the Hungarian H. Society presented their national organizations.After that Dr Vaga Gabor vice-president of the HHS was talking about the Factor Supply in Hungary.Then Istvan Kovacs HHS youth leader presented The Formation of the Hemophiliac Youth Community in Hungary.Marcu George secretary RHA replied him with the presentation of the Clinical Center for Evaluation and Rehabilitation ''Cristian Serban''We finished our symposium with my presentation of the bike campaign: Help for Hemophilia.At the end everybody agreed that we learned a lot from each other and we shall cooperate and do projects together.
The symposium was sponsored by NovoNordisk.You can see photos on http://picasaweb.google.hu/kkisslaci/Szimpozion?authkey=YZY96yZrjbU

Starting the Project

2008-05-01T04:58:00.000-07:00

January 27th 2008

Making this project is harder than I ever imagined to be. But I'm glad that I begin and hopefully God will help me to finish it.At first step I entered in contact with the Romanian Hemophilia Association and the Romanian Red Cross, then with the Bulgarian, Turkish, Hungarian Hemophilia Associations, after that with the World Federation of Hemophilia too. They approved my action.I shall go not only in the name of my Covasna County Section, but in the name of the Romanian Hemophilia Association! Their moral support and the others' means a lot for me.Now we are at the second step, which is fund raising and beginning the campaign in the media.We started with a press conference:http://www.libertatea.ro/index.php?section=articole&screen=stire&sid=195180 http://www.evz.ro/article.php?artid=337378 http://www.covasnamedia.ro/stiri/news.php?extend.3317 http://www.szekelyhirmondo.ro/article.php/Kisfiáért_kerekezik_Isztambulig/6808/http://pluszportal.ro/web/index.php?option=com_content&task=view&id=1925&Itemid=2 http://www.3szek.ro/modules.php?name=3szek&id=6519Our local TV was there too, and Radio Targu Mures, a regional radio, mentioned the project in the news too. I think that we started a good campaign in the media.We are at the beginning of the fund rising.We have to move fast!

New Project: Help for Hemophilia!

2008-05-01T04:52:00.000-07:00

1. Objectives :I shall go on a bike to the WFH Congress which will be held next year in Istanbul. The Romanian Hemophilia Association through this action wants to focus the public attention on hemophilia and to talk about our problems. I shall do 1089km in 14 days.

2. Justification: My younger son, Daniel has got severe hemophilia. He was diagnosed at the age of 1. Since then we faced with many problems through which I understood that I can’t manage alone Daniel’s situation. But after we entered in the association I realized that not only we have difficulties, that there are people who are in even worse situation. That’s why I decided to do this trip not only for my son, but for the whole hemophilia community.

3. Activities: During my trip I shall stop in each important town, no matter if it’s Romanian, Bulgarian or Turkish. There I shall meet the local hemophila associations and the local media too. Once arrived there in the name of our association I want to get in contact with other similar organizations to build common actions and develop a partner relationship over the medium to long term.

4. Duration and plan of action:

I shall do 1089km in 14 days.

17 May start from Sfantu Gheorghe to Brasov 32 km

18 May Brasov-Pitesti (via Bran) 133 km

19 May Pitesti-Bucuresti 113 km (via Leordeni, Titu)

20 May press conference in Bucharest

21 May Bucuresti-Giurgiu-Ruse 64+9 km

22 May Ruse-Sumen 112 km

23 May Sumen-Varna 93 km

24 May Varna Burgas 128 km

25 May Burgas-Primorsko 65 km

26 May Primorsko-Malko Tarnovo 78 km

27 May Malko Tarnovo-Kirklareli (Turkey) 53 km

28 May Kirklareli-Saray 68 km

29 May Saray-Durusu 77 km

30 May Durusu-Istanbul 36 km

31 May rest

1-5 June Conference!

5.Expected impact:

- to raise broad awareness of hemophilia not only in my country, but in other countries too.

- to show an alternative to people about how they can involve to help

-to provide fresh ideas and strategies for the youth about how they can spend their free time

6. Target group:

-Ministry of Health

- officials

- medical staff

- media

- ordinary people

7. Results:

-better medical assistance

- more medical products for treatment (an ordinary patient with severe haemophilia receives each month 1 dose monthly!)