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 Patients’ Organizations
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/
