HAPLOS is the community formed in 1993 by families of persons with hemophilia and some medical practitioners. It exists because there is a need for a community that can extend support to persons with hemophilia and their families. The organization was registered in 1994 as a nonprofit corporation. And this year, HAPLOS is celebrating its 25th anniversary.
The group is also the National Member Organization (NMO) for the Philippines to the World Federation of Hemophilia (WFH). Presidential Proclamation 1478 (Series 2008) declared April 17 as World Hemophilia Day, and the month of April as the National Hemophilia Awareness Month.
For its 25th year celebration, HAPLOS is carrying the theme: Sharing knowledge makes us stronger. As an anniversary initiative, it is also launching its intensified Hemophilia Awareness and Advocacy Program, and is including in its campaign not only hemophilia but also other inherited bleeding disorders.
Over the last years, HAPLOS conducted hemophilia education and care programs with the help of its medical counterpart. For the next years, HAPLOS is planning to continue its work to help persons with hemophilia live a life that is close to normal. This is possible as long as the person gets medical treatment for bleeds, gets access to adequate education and awareness about treatment and care for hemophiliacs, and continues to belong in a supportive environment. It is HAPLOS’ vision to see persons with hemophilia have better quality of life and to empower them to care for one another and even serve others.
Hemophilia, as you may already know, is a rare, congenital bleeding disorder that affected individuals will have to manage for life. The condition is due to a defective or deficient clotting factor that prevents an affected individual from forming a strong and stable blood clot. It affects mostly the male population.
In the Philippines less than 1,500 Filipinos have been identified with hemophilia. Sometimes, there might be serious or life-threatening bleeds, like bleeding within the head, usually resulting from injury; or bleeding into the throat, which may result from infection, injury, dental injections, or surgery; and major loss of blood.
HAPLOS’ 25th year celebration and its campaign for awareness include an appeal for compassion. Persons with hemophilia and their families need adequate government support and, likewise, support from the community. An affected individual and his/her family suffer from the beginning of life, and will have to contend with the condition until the end of life. Therefore, there is great need for an accessible and effective treatment not only for those with hemophilia, but also for individuals who have other forms of bleeding disorders.
HAPLOS exists for hemophilia.
For questions, call Hemophilia Philippines (HAPLOS Community) Foundation Inc. at 632-2398518, 09178-HAPLOS, 0933-8671419 or e-mail them at haplosfoundation@yahoo.com You can also visit the web site at www.hemophiliaphilippines.org
To be continued.