Christmas in the Hospital

The Romanian Hemophilia Association-Covasna County Section was invited yesterday to decorate a Christmas tree in the "Fogolyán Kristóf" Covasna County Hospital.

We were very happy to help  to ease somehow the patients' pain, and it was a good opportunity to pay back  the "Fogolyán Kristóf" Hospital's care.

NMO Advocacy in Action - London / UK

For two days London became the host of a very interesting and important workshop on hemophilia.
The theme was on "data collection and use in a challenging economic environment".
The participants were from Europe. There were hemophilia association representatives from Albania, Czech Republic, Latvia, Portugal, Serbia, Switzerland, United Kingdom and Romania (Sebastian Maranga, Laszlo Kiss). 

The program:
-Day One (December 11)
1. Introduction and opening remarks / by Mark Skinner and Aris Hashim
2. Opportunities and Threats / by Gordon Clarke and Antonio Almeida
3. Using Data for Advocacy / by Gordon Clarke and Antonio Almeida 
4. Case Studies
5. Economics and Hemophilia / by Mark Skinner and Claudia Black 
6.Importance of Collaborating with Clinicians / by Paul Giangrande
-Day Two (December 12)
7. Sharing and Planning Country Advocacy Strategies / by Aris Hashim
8. Advancing and Implementing your Advocacy Strategy / by Gordon Clarke and Antonio Almeida
9. Way Forward and Conclusion  / by Gordon Clarke and Mark Skinner

The program at a glance looks very simple: they will talk and we shall listen, and maybe at the end we shall tell our "bright" remarks. In fact they put us to work! After or during each presentation we had to work and give individual or team feedback. No one was left to stay in his/her ivory tower. In this way we learned a lot, not only from the presenter, but from each other too. 

During the workshop we saw that there are problems everywhere: lack of comprehensive treatment centers (Portugal), association strengthening (Switzerland), home treatment (Serbia), improve hemophilia treatment (Albania), to buy cheaper but better factors (Latvia), purchase products that going to developed (U.K.), keep the level of hemophilia treatment and improve the activity of the treatment centers (Czech Republic). Therefore each of us wanted to learn more about the hemophilia advocacy.
So, the aim of the workshop was, just what we needed:
1. to provide both qualitative and quantitative information on how to collect, use and present data in order to advocate for of standards of care
2. to alert participants to potentially damaging impacts of the global economic recession facing hemophilia community in Western and Central Europe
3. to support participants to enhance advocacy campaigns at national and international levels within Europe 4. to assist in further strengthening advocacy knowledge and skills
I think that the WFH representatives achieved their goal. With their support each NMO representative was able to create a skeleton of advocacy or lobbying strategy for the near future. Now it's up to us how to develop and apply it!

We have to thank you to WFH and to the presenters for their professionalism. It was a real interactive workshop. We simply love it!
Thank you to Baxter too, who made this event possible.   

The 20th Anniversary Celebration of the Hungarian Haemophilia Society

The board members of the Romanian Haemophilia Association and our local branch president were invited on the 4 December to celebrate with our twinning partner their 20th Anniversary Cellebration.
The speakers were:

Dr. Eszter Miskovits Director of the National Blood Service of Hungary
Tamás Pelyhe Founder President of the Hungarian Haemophilia Society between
1990-2000
Zoltán Molnár President of the Hungarian Haemophilia Society between 2002-2009
Dr. László Kalász Former Medical Vice-President of the Hungarian Haemophilia Society
between 1997-1999
Dr. Gábor Varga President of the Hungarian Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
Thomas Sannié Vice-President of the French Haemophilia Society
Board Member of the World Federation of Hemophilia
Daniel Andrei President of the Romanian Haemophilia Association
Dr. Delia Mihailov, Medical Vice-President of the Romanian Haemophilia Association
Mihály Trucki President of the Covasna Section of the Romanian Haemophilia
Association
Dr. Gabriele Calizzani President of the Italian Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
Alain Weill Vice-President of the French Haemophilia Society
Steering Committee Member of the European Haemophilia
Consortium
During the celebration it was presented Dr. Peter Jones' book ''Living with Haemophilia'' translated in Hungarian language by the Hungarian Haemophilia Society.
In the afternoon it was organized a Santa Claus party for the Hungarian children who suffer of haemophilia.

On 6th of December it was organized the Twinning Meeting between the Hungarian Haemophilia Society and Romanian Hemophilia Association. Here we discuss about our actions which we will organize together in 2011.
Our friends from France and Italy were invited too. They helped us with many suggestions.