The difficult burden of the disease makes us aware that involvement of everyone, patients, parents, doctors, supporters, together with the responsible institutions, will bring in the near future, permanent access to treatment and multidisciplinary care, thus leading to a life. without major restrictions for hemophilia patients.
The Romanian Hemophilia Association (ARH) represents the interests of all patients with hemophilia and vonWillebrand’s disease in our country, being the only patient organization in Romania recognized and affiliated as a full member within the World Federation and the European Hemophilia Consortium.
Dedicated doctors, parents, patients with haemophilia, understood how important it is to become the spokespersons for our life interests, which is why, in our country, the Romanian Hemophilia Association was founded in 1992, following the efforts of Prof. Margit Serban and Mr. Conf. Daniel Lighezan, to whom we give full gratitude for the effort, energy, devotion and permanent effort they have in increasing the quality of life of patients with haemophilia in Romania. The Romanian Hemophilia Association has been affiliated with the World Hemophilia Federation since 1994, later becoming a full member of the European Hemophilia Consortium.
The reason for the establishment and existence of associations of patients from all over the world that unite in each country the community of patients with haemophilia, has been and remains an extremely important one, as the people with haemophilia know best their needs, being the best lawyers of their cause.
The goal of hemophilia treatment, declared by the International Hemophilia Federation, is to “minimize disability and prolong life, to facilitate the attainment of physical and social well-being and to help each patient reach their full potential.”
Keeping hemophilia under control requires prompt and sufficient treatment. This can be achieved by the existence of a functional network for the treatment of haemophilia and our compliance, of patients.
That is why “no child born with haemophilia should live in physical suffering, disability or the prospect of early death” (FIH). By proper treatment, a person with hemophilia can have high life expectancy, a life with few restrictions.
In order to achieve this goal we need our vision, unity and involvement of all, those who have on their lips the word “haemophilia”
I wish you all good health!