World Hemophilia Day (17/04)

Every year on April 17, many countries join the World Federation of Hemophilia (WFH) and the World Health Organization (WHO) and celebrate World Hemophilia Day or World Hemophilia Day.

The overall goal of the activities is to draw public attention to the problems of hemophilia and do everything possible to improve the quality of medical care provided to patients with this incurable genetic disease.

The date itself, April 17, coincides with the birthday of WFH founder Frank Schneibel and has been celebrated since 1989. And hemophilia — blood clotting — is one of the most severe genetic diseases caused by the congenital absence of clotting factors VIII and IX in the blood.

According to some estimates, today the number of hemophiliacs in the world is 400 thousand people (one in 10 thousand men). According to the Register of Hemophilia Patients of the Ministry of Health of the Russian Federation as of 2020, there are about 10 thousand patients with hemophilia and Willebrand disease in Russia in need of drug therapy.

In 2000, the All-Russian Society of Hemophilia (VOG) — was created as a charitable organization for disabled people on an all-Russian scale. The VOG includes 68 regional organizations. Since 2008, the state program «High-cost nosologies» (HZN) has been implemented in the Russian Federation. Thanks to free drug provision in Russia, a significant improvement in the quality and life expectancy of people suffering from blood clotting disorders has been achieved.

Until recently, few sick children lived to adulthood. Today, without treatment, the average life expectancy of a person with hemophilia is about 30 years, and from the age of 12 people become disabled — can move on crutches or in wheelchairs. Currently, innovative therapy methods have appeared in the arsenal of specialists that can significantly improve the quality of life of patients and increase its duration. When receiving drug therapy, the life expectancy of such a person does not differ from the life expectancy of healthy people.

In addition, new treatments for hemophilia — are highly purified drugs that do not contain proteins of human origin, making them safe from the point of view of a potential viral infection.

With a sufficient number of medications, a patient with hemophilia can lead a full life: study, work, start a family, that is, be a full-fledged member of society and benefit his country.

But still, insufficient provision of antihemophilic drugs leads to early disability, primarily for children and young people suffering from hemophilia. According to WFH, to date, about 75% of patients with hemorrhagic diseases still receive inadequate care or no treatment.

Although through the efforts of scientists, doctors, «World Health Organization», «World Hemophilia Federation», «Society of Hemophilia Patients» today the diagnosis of «hemophilia» is no longer a death sentence, this is not a reason to rest on your laurels, because the final victory over this disease is still far away.

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