I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Our own Mark Skinner, person with hemophilia and former NHF president, is the WFH president.

Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.

Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.

Now, I hope to blog later this week but I blew my converter within hours of arriving, and may not have battery power! I'll do my best... in the meantime, please read about Project SHARE's trip to Ecuador through our What's New on the home page. There's lots happening internationally!

(Photo 1, L to R: Dr. Armando Pena, Honduras; Laurie Kelley; Angel Almodovar, Talecris; Vicente Soriano, father of child with hemophilia and board member FAHEM, Dominican Republic; Dr. Angel Beltran, Talecris El Salvador)

(Photo 2: Haydee de Garcia, president, FAHEM, Domincan Republic; Laurie Kelley; Dra. Rosa Nieves, hematologist, Robert Reid Cabral Hospital, Domincan Republic)

Labels: WFH, World Federation of Hemophilia

Kiss Laszlo lives in Romania. He's the father of Daniel, who has severe hemophilia A. I've been to Romania twice-- a beautiful, pastoral country, with rolling mountains and quaint villages. I've visited with the hemophilia patients and doctors, and helped out with hemophilia camp in 2006 on the Black Sea. We donate quite a bit of factor to Romania. Only recently has the government begin to buy substantial amounts of factor for its people. A lot of patients, despite the excellent medical care from its wonderful doctors, are crippled. You just have to have factor to keep joints in good shape.

Kiss knows this and knows we need to raise awareness of hemophilia needs. He came up with a brilliant idea-- to bike all the way from Romania to Istanbul, where the World Federation of Hemophilia starts its biannual Congress next Sunday. "I decided to do this trip not only for my son, but for the whole hemophilia community. I shall do 1089km in 14 days," he pledges on his blog, which you can (and should) read at

http://kkisslaci.blogspot.com/

Kiss is blogging along the whole journey! You can read about his exploits right now. "During my trip I shall stop in each important town, no matter if it’s Romanian, Bulgarian or Turkish. There I shall meet the local hemophilia associations and the local media too. Once arrived there in the name of our association I want to get in contact with other similar organizations to build common actions and develop a partner relationship over the medium to long term."

What a wonderful idea and what devotion! I cannot wait to meet him. I will be off to Istanbul myself on Friday, and will also be blogging about my trip. Please tune in and see what is happening in the world of hemophilia.

(Photo: Kiss, in red, surrounded by members of the Romania Hemophilia Association)

Labels: Kiss Laszlo, WFH