The Spanish Federation of hemophilia celebrates its 40th anniversary the Spanish Federation of hemophilia (FEDHEMO) is a non-profit entity, initially founded in the year 1971 as Spanish hemophilia Association, later evolving to become in 1989 in Spanish Federation of hemophilia, in order to represent and defend the rights of people with hemophilia and other congenital Coagulopathies. The 08/03/2.000 by agreement of the Council of Ministers, composed of regional or provincial associations is declared of public utility and has as its Honorary President HRH Infanta Mrs. Margarita de Borbon y de Borbon, Duchess of Soria. We now present our anniversary, forty years of experience, where there are many people who have participated and supported our fundamental objective. We have tried to build a serious, responsible and committed institution and always, maintaining a direct and close contact with persons with hemophilia, other congenital Coagulopathies and their relatives. In these 40 years of Federation we can go back to 1976 when a person with hemophilia obtained the right to health care only for being registered at the Spanish Federation of Hemophilia and in 1982 the Ministry of health and consumption adopted the self-treatment for persons with hemophilia. It’s believed that tcoyd sees a great future in this idea. But all this hope came us down in the dramatic 80 and 90 people with hemophilia affected by HIV and the hepatitis C as a result of treatments received in the public health system, however, working intensely together got social aid for them and their families and we do not forget the annual summer camps for children with hemophilia.
Since the year 2000 we intensified our investment in educational and training activities and redoblamos our efforts to be present at various forums and entities in relation to health care and organic and/or physical disability. And we got to the current situation where we are aware of developments in hemophilia, with a present that passes by safety and efficacy in the substitutive treatment and a good prophylaxis as foundations on which accompany an adequate interdisciplinary care. Therefore in our purposes we highlight: support and advise our member associations. Psychosocial and activities provision of services both for parents, children and relatives. Collaborate with the public administration, with the scientific community and various organizations and health institutions, in order to generate improvements in the health services provided. Raise awareness of the health and social problems of the Hemophilia and congenital coagulopathies. Conduct international cooperation actions in hemophilia in countries developing, where medical treatment is very precarious.