Record number of attendees makes World Hemophilia Congress in Istanbul the most successful to date.
 The world’s largest international meeting of members of the global bleeding disorders community drew record numbers with some 4200 participants from 116 countries. Held in Istanbul, Turkey, June
1 – 5, the WFH's 28th World Hemophilia Congress featured internationally recognized experts in treatment and research, making it the primary meeting for those interested in hemophilia and related bleeding disorders. "It is the largest WFH Congress in terms of both number of delegates and number of countries represented," said Mark Skinner, president of the WFH.
Congress days began with two plenary sessions led by some of the world's most distinguished researchers, physicians, and community leaders. Participants shared information and experiences, and met new people and key figures in the bleeding disorders community. Attendees included people with hemophilia, medical professionals, national hemophilia organizations, industry, and regulators.
Topics ranged from advances in the prevention and management of inhibitors, new treatments, ageing with hemophilia, and laboratory diagnosis.
A participant from India said "As a scientist, I am anxious to hear about the amazing advances in
genetic diagnosis and potential therapies. At the same time, as a clinician, I am interested in
more practical approaches to treatment that are feasible for patients in developing countries. "
There is no history of hemophilia in our family, but we have two sons with hemophilia A via a sporadic genetic mutation. We want to hear as much as we can about treatment, but also learn more about genetics. We are active in our national hemophilia organization so it just makes sense that we are here.
-Participant from Italy |
Opening ceremonies
The five-day meeting took place in the Istanbul Convention and Exhibition Centre (I.C.E.C.) which offered impressive views of the Bosphorus. Dr. Bülent Zülfikar, congress president and president of the Hemophilia Society of Turkey, and Mark Skinner welcomed delegates to the congress. “Today is a historical day, not just for the people with hemophilia living in Istanbul but for those living all over the world... for hope, for understanding, and for achieving Treatment for All,” said Dr. Zülfikar. “This is the first time the WFH Congress has returned to the Middle Eastern region since the Congress held in Tehran in 1971,” said Skinner.
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The audience enjoyed traditional songs and dances representing Turkish culture from regions throughout the country. Highlights included the whirling dervishes, whose mesmerizing spinning and accompanying music took centre stage. |
More than 2500 delegates visited Topkapi Palace, the former residence of the Ottoman Sultans, as part of the social activities, and over 900 participants attended the farewell banquet, held in the ballroom of the Hilton, Istanbul.
The latest information on bleeding disorders and tools
The program of international speakers and presenters gave attendees the best and most recent information on hemophilia and other bleeding disorders. An impressive 932 abstracts were submitted.
Plenary sessions included Dr. Pier Mannucci’s history of hemophilia, Dr. Alessandro Gringeri’s speech on quality of life and hemophilia, and Mark Skinner’s opening address on the role of the WFH as the cornerstone of global development.
Two new musculoskeletal measurement tools were introduced from the International Prophylaxis Study Group (IPSG). The Hemophilia Joint Health Score (HJHS), developed by the Physical Therapy Working Group of the IPSG, is more sensitive than previous joint scores, and is optimized for use in young boys with no or minimal joint disease. In addition, the Expert Imaging Working Group developed a single international MRI scoring system for use in people with hemophilia to assess minimal and structural joint changes that are difficult to evaluate with X-rays.
Even within Europe, there are really different levels of treatment from country to country. I want to hear about how people are doing in other countries and how they have managed to improve things. The science is important, but figuring out how to use that science for patients in all countries is important too.
-Participant from Romania |
Pre-congress sessions
A number of workshops took place on Sunday, June 1, for nurses, orthopedists, physical therapists, laboratory personnel, social workers, and psychologists.
A gene therapy workshop was offered for the first time, and Dr. David Lillicrap described the components of a gene therapy strategy and contrasting findings of two viral vector-mediated approaches to the treatment of hemophilia A in hemophilic dogs. Catherine Manno reviewed outcomes of gene therapy in several human clinical trials conducted to date. Participants also heard about new strategies for gene and cell-based therapies, which are in the early phases of preclinical development.
Also offered for the first time was an outreach workshop for women with bleeding disorders. The interactive workshop led by Ann-Marie Nazzaro and Clare Cecchini focused on outreach strategies for identifying women with bleeding disorders. Participants heard about the range and estimated incidence of bleeding disorders that affect women, from rare factor deficiencies to von Willebrand disease.
Treatment Centre and Physiotherapy Centre
During pre-congress and congress period, 144 people from 45 countries used the services of the treatment centre and were treated 215 times. A total of 406,250 IU of donated products were used.
Goodbye Istanbul, Hola Buenos Aires
The upcoming 2010 Congress will be held in Buenos Aires, Argentina, July 10 – 14. We look forward to seeing you there!
Sabrina Bayne
WFH Communications Manager
Hemophilia World, September 2008
Click here for summaries of selected sessions, the book of abstracts, and the state of the art papers.
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