Christmas in the Hospital

 It becomes a tradition on Christmas to visit  the Fogolyán Kristóf Covasna County Hospital. 

We decorated the Christmas tree for the patients and doctors.
It's such a good feeling to give! 
Merry Christmas and a Happy New Year!

Family Day

On 22.10.2011 was organized the Family Day of our local association.
Here is the program:
1. Mr. Trucky Mihály -local president of RHA- was greeting the participants
2. Mr. Kiss László  -local secretary of RHA- presented the activity of our local and national association
3. Mr. Bedő József -Local Red Cross volunteer- presented first aid methods
4. Free discussion
5. Family picnic

It was a good opportunity to learn, to know better each other, to make new friendships, to play. It was good to feel that we are not alone. We think that this was a good chance to strenghten our association.

Thank you a lot  to BIOTEST pharmaceutical company and Red Cross - Sfantu Gheorghe for their support!

Haemophilia Summer Camp at Balaton

 On 23.07.20011-06.08.2011, Zánka will be the home for the Hungarian haemophilia children and their guests from Romania.
Zánka is a youth center nearby the beautiful Balaton lake. Here the children will have many opportunities to play, learn and make friends.  
Here is the videoclip about the 2010 camp activity. This camp was also organized in Zánka. There were 4 Romanian children too! 


MHE Nyári Rehabilitációs Tábora 2010 Zánka from Péter nagy on Vimeo.

Run for Haemophilia

Astilean Eduard and Nagy Attila were running for us on the hardest Romanian marathon. The Marathon7500 was organized between 7th and 10th of July 2011. The course followed a marked trail in Bucegi Mountains with a positive vertical gain of approx. 7500 meters.The marathon time limit was 50 hours for the Elite section and 26 hours for Hobby section. The total trail length was approx. 90 km for Elite section and approx. 45 km for Hobby and Companies sections.

Our friends finished at the 9th place of 40 teams!
They said that they run not oly to compete. They did this marathon  for those who suffer and die because of haemophilia.
Here you can read the article, which appeared in our local newspaper:
http://www.covasnamedia.ro/beta/?p=20596

World Health Day – 7 April 2011

The World Health Day our local organization celebrated together with other health organizations in the Queen Elizabeth's Park, St. George City.
We were discussing  with the people who visited our stands and share to them brochures.
It was a good opportunity to be known by the ordinary people and share with them our problems.   
Sorry, no photos aviable! I have formatted accidentaly my camera.

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.