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.