Rare Disease Report

April 17 is World Hemophilia Day

APRIL 17, 2016
Ruth J Hickman, MD
April 17 is World Hemophilia Day, promoted by the World Federation of Hemophilia (WFH) to increase awareness and support for bleeding disorders. This global network of not for profit patient organizations works to improve the lives of patients who have hemophilia or other blood clotting disorders.

Go Red!

To raise awareness of World Hemophilia Day, patients and advocates are encouraged to ‘light it up red’. If there is a landmark nearby, you are encouraged to contact them to see if it can be lit in red on April 17.

You can also, pull out those red holiday lights from your basement and participate at home.  Feel free to use your imagination on who to light things up to raise awareness of hemophilia.

Different Types of hemophilia

There are many different types of bleeding disorders, including hemophilia (types A and B), other clotting factor deficiencies, and platelet disorders. Most are rare conditions. Individuals with these conditions have clotting factor proteins or platelets that work poorly, if at all. For example, type B hemophilia results from a deficiency in a clotting factor called factor IX.
The severity of symptoms varies based on the amount of clotting factor involved and its degree of functioning. Without proper treatment, affected individuals may suffer from severe pain or permanent joint damage. Severe bleeds into the brain or other organs can cause death.

History of World Hemophilia Day

World Hemophilia Day was started by the WFH in 1989 to increase global awareness of hemophilia and other bleeding disorders. (April 17th was selected in honor of the birthday of Frank Schnabel, founder of WFH.)  Each year, numerous landmarks change their lighting to red, the color associated with awareness of the disease. Many member organizations of the WFH participate in the awareness day, including the National Hemophilia Association in New York City.
This year for World Hemophilia Day, WFH is drawing attention to the lack of access to proper treatment experienced by many people with bleeding disorders. Treatment exists, but the vast majority do not have access to it, or even to proper diagnosis. Around 75% of people with these conditions have never been diagnosed. In a press release, WFH notes the enormous variation in the level of care available to patients, even when diagnosis is available. Some countries, like Senegal, simply cannot afford to provide care at the current prices for treatments.
These countries need humanitarian aid to predictably supply these products. To this end, in 1996 the WFH created the World Federation of Hemophilia Aid Program, which it recently expanded. In 2015, WFH donated over 52 million International Units of clotting factor to 63 countries.
Over the next three years, the program aims to make more donated products available in developing countries. The program also hopes to increase the availability of emergency treatments for people with blood clotting disorders and make more blood clotting factors available for those who need surgery. Those with severe clotting disorders also benefit from regular infusions of clotting factors, and the program will also help make these preventative treatments more readily available.
More information about bleeding disorders and World Hemophilia Day is available at www.wfh.org.


Ford S. The expansion of the WFH Humanitarian Aid Program: Transforming the lives of those in need. Hemophilia World. World Federation of Hemophilia. ://www.hemophiliaworld.org/2015/12/the-expansion-of-the-wfh-humanitarian-aid-program-transforming-the-lives-of-those-most-in-need/. December 7, 2015. Accessed April 16, 2016.
World Federation of Hemophilia. World Hemophilia Day. Press Release. Available at http://www.wfh.org/en/whd. Accessed April 16, 2016.
World Federation of Hemophilia. World Hemophilia Day. http://www.wfh.org/en/whd. Accessed April 16, 2016.
World Federation of Hemophilia. Bleeding Disorders Fact Sheet. Available at http://www.wfh.org/en/whd. Accessed April 16, 2016.
World Federation of Hemophilia. WFH Humanitarian Aid Program. http://www.wfh.org/en/page.aspx?pid=815. Accessed April 16, 2016.

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