World Hemophilia Day!

Source:  World Hemophilia Day!    Tag:  hemophilia organizations

Today is world Hemophilia Day 2008. This year's theme is Count Me In.
The World Federation of Hemophilia describes it better than I could:

This year the theme of World Hemophilia Day (April 17) focuses on registering and identifying patients: Count Me In.

It has often been said that there is strength in numbers. This is definitely true in the bleeding disorders community. As a rare disease group, in order to be heard by governments and others, getting the numbers to back up your case for support makes a huge difference.

Having accurate statistics on the number of people with bleeding disorders identifies how many people are affected and helps ensure that they get the necessary treatment. It also helps to validate claims with ministries of health and build a case for support.

The WFH’s vision of Treatment for All is that all people with bleeding disorders need access to adequate care and treatment. The first step to achieving this is to identify those patients. For 10 years now, the WFH has been collecting data from national hemophilia organizations around the world to quantify the number of people affected with bleeding disorders. Our most recent survey identifies 205,472 people with bleeding disorders in 100 countries.

On April 17 we are launching a new publication on outreach to identify patients. The WFH has also developed a number of tools to help patient organizations, hemophilia treatment centres, and others raise awareness about the need to be counted and help identify patients. These include a poster, news release, factsheets on outreach and national patient registries, as well as educational materials for patients on hemophilia, von Willebrand disease, and rare bleeding disorders.

World Hemophilia Day was started by the WFH in 1989. April 17 was chosen as the official date in honour of WFH founder Frank Schnabel, who was born on that day.

On the day, hemophilia organizations and treatment centres around the world organize gatherings, sporting events, exhibitions, and other activities to raise awareness of the issues affecting people with hemophilia.

We encourage all patient organizations, treatment centres, and corporate partners to celebrate World Hemophilia Day this year.

We want to count you in!