2016. október 4., kedd

Hemophilia Family Day in Our Local Branch

Mr. Andrei Daniel, our president from the national association was with us.
 There were presentations about the situation of hemophilia treatment in Romania, about the activity of the national association and our local branch. The presenters were: Andrei Daniel (president ARH), Trucki Mihály (local president), Kiss László (board member ARH and local secretary)


The members of our local branch listened very attentive.  


 There were free discussions after.


 ....and of course a lot of play too!



We had a great time together! 


See you next year! 





2016. szeptember 29., csütörtök

Hemophilia Family Day

Szeretettel várunk mindenkit! Vă aşteptăm cu drag!  
Wait for you! 

2013. október 14., hétfő

Covasna County Family Meeting


On 12.10.2012, our local association organized the family day. There were families from our county and guests from Harghita County.
In our program Trucki Mihály, our local president gives a warm welcome to the audience, then Kiss László, the secretary, presents our annual activity, after that it was programmed a workshop about haemophilia. 
We invited jurnalists from the Romanian and Hungarian media and we discuss with them about our problems:
http://stiri.covasnamedia.ro/2013/10/14/cand-sangele-nu-inseamna-viata/
and
http://www.digi24.ro/Stiri/Regional/Digi24+Brasov/Stiri/Tratament+insuficient+pentru+bolnavii+de+hemofilie 
and
http://www.3szek.ro/load/cikk/64375/europaban_utolsok_a_hemofilia_kezeleseben
After the official part came the other important part of the meeting, when families were met, discuss, and feel good.


2013. augusztus 30., péntek

Haemophilia Advocacy in Constanta



The meeting was organized on 14th of September. 
This time we choose Constanta, because is one of the biggest towns in Romania.
We had before summer camps here, but this was the first time when we did real advocacy for haemophilia in this region.
This twinning gives us an opportunity to to reinforce our relations with those who suffer of haemophilia, with those who take care of them, and with the local media in a certain region of Romania. 
Our Hungarian partners are with us, each time help us in our advocacy. 

Here is the program of our meeting:  
 
Radu Gănescu – The National Health System from the Perspective of the Chronic Patients
President of the Coalition of Rare Disorders PatientsOrganizations


Andrei Daniel – A New approach in Romanian Haemophilia Treatment
President of the Romanian Heamophilia Association 
Dr. Gábor Varga – European Guidelines  of the Hemophilia Treatment 
President of the Hungarian Hemophilia Society
Dr. Apostol Adriana – The Treatment of the Hemophilia Patients in Constanta 
Haematologist – Constanta County Emergency Hospital 
Dr. Georgeta Cozaru - Together for the benefit of the pations who suffer of rare diseases 
Geneticist - Constanta County Emergency Hospital  
László Diósi – Strengthening the the Haemophilia Patient Thorough Group Activities
Vice President of the Hungarian Haemophilia Society 
Zsuzsa Pintér – The Parents’ Role in the Life of a Haemophilia Association
Alexandru Costea – A Life with Haemophilia 
Haemophilia Patient   
We achieved our goal. There were a real interest both from the side of the TV channels and newspapers: 
and 
http://www.tvlitoral.ro/simpozionul-regional-de-hemofilie-pacientul-cu-hemofilie-din-europa-se-desfasoara-la-constanta/

2012. november 8., csütörtök

03.11.2012 / Our Local Association at Romanian-Hungarian Haemophilia Meeting in Iasi


Iași, former capital of Moldova, is one of the biggest towns in Romania.
It was a long time ago when a meeting on haemophilia was held there.
That's why we took the opportunity by the twinning to reinforce the position of haemophilia in that region too.

Here is the program of the meeting:

1. Collaboration Between Institutions, Doctors and Patients
Prof. Dr. Vasile Astarastoaie - President of Romanian Medical Council

2. The Situation of National Haemophilia Care and Ways of Improvement
Andrei Daniel - President of Romanian Haemophilia Association

3.  European Principles of Haemophilia Care
Dr. Gábor Varga - President of Hungarian Haemophilia Society

4. The Medical Care of the Patient with Haemophilia
Dr. Alina Dascălu and Dr. Dan Răican - Regional Oncology Institute of Iași

5. The National Plan of Rare Diseases 
Dr. Cristina Rusu - Grigore T. Popa University of Medicine and Pharmacy 

6. The Role of Physiotheraphy in Haemophilia Patient 
Dr. Alina Lăcătuşu - Clinical Rehabilitation Center Cristian Serban / Buzias
Sebastian Maranga - Secretary of Romanian Haemophilia Association

7. A Life with Haemophilia
Basu Dorin - patient
8. The Role of the Family in the Life of a Haemophilia Patient
Kiss László - parent

The Twinning Meeting in Iaşi it was a real success.
Here is the article on the local TV Channel:
http://www.digi24.ro/stire/Condamnati-de-sistem-la-si-mai-multa-suferinta_55436

2012. október 8., hétfő

Haemophilia Family Day


On 06.10.2012, our local association organized the family day. There were families from our county and guests from Brasov, Harghita and Mures Counties.
In our program Trucki Mihály, our local president gives a warm welkome to the audience, then Kiss László, the secretary, presents our annual activity, after that it was programmed an educational documentary about haemophilia.
After the official part came the most important part of the meeting, when families were met, discuss, and feel good.

Our children were playing football, hide and seek ..........

It was a real good day for us!