 Hemophilia organizations around the world celebrated World Hemophilia Day, April 17, with a wide range of activities, events, and campaigns to promote improved treatment and care.
World Hemophilia Day was started in 1989 as a way to increase awareness of hemophilia and to bring attention to the needs of those affected by the disorder. April 17 was chosen because it was the birthday of WFH founder Frank Schnabel. A different theme is suggested each year for World Hemophilia Day. For 2005 it was: Get vaccinated! Prevent hepatitis A and B.
The day has come to mean many things to national hemophilia organizations in different countries. Here’s how some of them commemorated the occasion this year:
 Argentina celebrated World Hemophilia Day with outdoor events and children’s entertainment just outside Buenos Aires in the city of Luján. About 160 patients, families and medical professionals enjoyed the sunshine with a barbeque, walks and other activities.
The Hemophilia Society of Bangladesh organized a news conference and rally at the National Press Club in Dhaka. Attended by prominent speakers, the events were widely covered by the major daily newspapers and television channels.
Young people with hemophilia in Ecuador visited schools to talk about the disorders, as part of an awareness raising campaign.
Brochures were distributed in Honduras to inform people about bleeding disorders. Patients and families celebrated the day in Tegucigalpa with a gathering, presentations and events for children.
Hemophilia associations in India continued their record of successful campaigning with high profile events across the country. These included a rally in Mumbai and a walkathon in Bangalore with hundreds of participants carrying placards. Medical experts delivered lectures at a function in Calcutta and a free health checkup for hemophilia patients was organized.
Local hemophilia associations 
in seven Italian cities distributed information and organized fundraising events in the country’s biggest ever bleeding disorders awareness campaign. The campaign generated significant national media coverage and was publicly supported by leading actors and a member of the Italian senate.
Milan ’s renowned opera house, La Scala, staged a performance of the ballet, Giselle, with proceeds going to World Hemophilia Day. Leading auction houses, Il Cigno and Christie’s also organized auctions to raise funds for the hemophilia community
Latvian patients and doctors held a well attended hemophilia information meeting in Riga as well as other events. Many of the activities focused on hepatitis prevention amongst people with hemophilia.
In New Zealand, a parliamentary dinner, organized by the national hemophilia association, was used as part of a compensation campaign for people with hemophilia who have contracted hepatitis C.
Special events in Pakistan were organized by hemophilia association chapters in Lahore, Karachi, Peshawar and Quetta.. Senior representatives of the national association appeared in a live television interview broadcast to 54 countries. The federal health minister presided over a gathering at the Pakistan Institute of Medical Science in Islamabad. Red Crescent officials, World Health Organization representatives and other dignitaries also attended the event, which attracted much media coverage.
The national hemophilia association in Peru celebrated World Hemophilia Day with various events including a blood drive.
Members of Portugal’s hemophilia community, gathered in the historical city of Vila de Óbidos for an enjoyable day of events amongst the medieval buildings. The benefits of prophylaxis were promoted through posters distributed to hemophilia treatment centres and the association conducted a media campaign to raise public awareness of hemophilia
The Hemophilia Association of Uruguay held itsgeneral assembly and organized a ceremony in memory of its former president, Douglas Piquinela, who died last year.
On April 17, Alejandro Garrido, became the world’s first personwith hemophiliato compete in Venezuela’s Cruce a Nado Orinoco-Caroni, an international swimming race across the junction of the Orinoco and Caroni rivers. The 16-year-old student fought strong currents for 90 minutes to complete the 3.1 kilometre swim. He was greeted at the finish by his parents, doctors, and hemophilia patients.
West Bank and Gaza: The Palestine Avenir Foundation/National Center for Blood diseases-Hippocrates celebrated World Hemophilia Day in Ramallah. Patients, families and dignitaries gathered for a variety of events including presentations, laboratory tests, and children’s entertainment. Speakers urged patients to prevent hepatitis A and B through vaccination. Hemophilia association representatives used the opportunity to talk to the media about the need for improved hemophilia treatment and care.
To help national associations promote World Hemophilia Day, the WFH contacted media organizations and prepared posters, a fact sheet, and template news releases for the event. We are very pleased that many associations used this material and adopted the message about the importance of hepatitis A and B vaccination.
Hepatitis A and B Fact Sheet
Get vaccinated! poster
World Hemophilia Day Backgrounder
Bayer HealthCare News Release: Bayer Biological Products signs exclusive agreement with World Federation of Hemophilia to fund International Nursing Fellowship Program.
Reports from around the globe
Deccan Herald News Service Bangalore
The New Nation, Bangladesh’s Independent News Source
The Telegraph, Calcutta, India
PharmaLive
Last Updated June 2005
|
