WFH Count Me In Poster

World Haemophilia Day 2008 – Count me in!
Mon, Apr 14 2008

April 17 is World Haemophilia Day!

This year the official theme is Count Me In!. The focus is on identifying all patients with bleeding disorders.

Every year, countries around the world join the World Federation of Hemophilia (WFH) in celebrating World Haemophilia Day. The common goal for this day is to increase awareness of haemophilia and reaffirm our commitment to improving care.

Registering all patients with bleeding disorders is the first step in achieving WFH’s vision of Treatment for All - that all people with bleeding disorders need access to adequate treatment and care.

Why is accurate data on numbers so important in the bleeding disorders community?
• Strength in numbers – as a rare disease group, it brings together information on how many people are affected.
• It helps to understand treatment needs and make sure people have access to the care needed to achieve and maintain their quality of life.
• It backs up your case for support so that you can be heard by governments and other health authorities.
• It builds support for a national haemophilia program.

An example of this was the national haemophilia association in Venezuela. With WFH support, the association has set up a team to diagnose and help people with haemophilia in the country’s poorer eastern regions. The team’s regional visits include blood testing and diagnosis, educating patients and families and training health professionals. More than 1,000 new patients have been registered in the past two years. Helped by the data from this program, the association was able to persuade the government to supply treatment products for all Venezuelans with haemophilia.

Global and Australian statistics
WFH collects data from national haemophilia organizations around the world to count the number of people affected with bleeding disorders – the latest WFH Global Survey (2006) identifies 205,472 people with bleeding disorders in 100 countries. All countries can benefit from this information. Haemophilia Foundation Australia (HFA) works with Australian Haemophilia Centre Directors’ Organisation (AHCDO) and the National Blood Authority (NBA) to contribute data about haemophilia care and treatment in Australia.

WFH World Haemophilia Day awareness resources
Include:
• A new publication on outreach to identify patients (to be launched on April 17)
• Poster, news release, fact sheets on outreach and national patient registries
• Educational materials for patients on haemophilia, von Willebrand disease, and rare bleeding disorders.

World Haemophilia Day is officially celebrated on April 17, the birthday of World Federation of Hemophilia (WFH) founder, Canadian Frank Schnabel, who died of AIDS in 1987 as a result of contaminated blood products.

For more information on World Haemophilia Day, WFH downloads and education resources, visit the WFH web site – www.wfh.org.