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 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: 

http://www.reporterntv.ro/stire/simpozion-privind-problemele-cu-care-se-confrunta-bolnavii-de-hemofilie-organizat-la-constanta  

and 

http://www.tvlitoral.ro/simpozionul-regional-de-hemofilie-pacientul-cu-hemofilie-din-europa-se-desfasoara-la-constanta/

 

New meeting in Constanta

Short Movie About The Twinning

New Campaign for Haemophilia

The twinning gives us new ideas on the haemophilia advocacy.
The Romanian Haemophilia Association started a TV campaign on ACASA TV.


ACASA PUNE PRET PE VIATA - O campanie sociala pentru acordarea de tratament bolnavilor de hemofilie. Alatura-te si tu! pe www.acasatv.ro

Romanian and Hungarian Twinning Meeting In Iași

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

Haemophilia Twinning Meeting in Iasi

On November the 3th  our Twinning meeting will be held in Iasi at Hotel Unirea.

WORLD HAEMOPHILIA DAY

We celebrate it in Timisoara, Romania.