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.).

NEW CHANGES FOR THE NGOS IN ROMANIA

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

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

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

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

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

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