On April 17, every year, starting in 2004, when this day was organized for the first time by Adriana Henderson and Laurie Kelley from the United States of America, we organize, in our country, events dedicated to hemophilia, together with doctors, decision makers and supporters. We mark this day in order to increase the degree of information and awareness of the population on this condition. Although we are seen as ill, we do not think that our suffering is seen as great. Many of us are getting harder and harder. We pass each other and it is not sufficiently known what difficult situations our parents are going through. We are people who strive to have a normal life but the system has not helped us much. We know that worldwide, 420,000 people have haemophilia. 94% of people with haemophilia are supported by family members or partners, indicating the degree of dependence of the disease. 41% of parents of patients with haemophilia reported negative experiences when they told others about their sick children. On this occasion, we publicly thank the parents of the patients with haemophilia for the dedication and love they are fighting for their children every day and we consider them some heroes.
Hemophilia is a treatable disease. It must be understood that the treatment of haemophilia is effective and has proven to be safe, and the provision of appropriate therapy is cheaper than treating subsequent complications.