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:
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: