The Kenya Hemophilia Association (KHA) was established in Nairobi in 1979. In 1992, it was recognized as a National Member Organization (NMO) by the World Federation of Hemophilia (WFH). With this status, it is the official Kenyan patient organization in charge of representing the rights of all patients living with Hemophilia and allied bleeding disorders in Kenya. Kenya Hemophilia Association’s primary role is access to care for all patients with hemophilia.
M. Battazza Freire
The idea of creating a special issue of OJHM for the World Hemophilia Day, came from the real purpose of this anniversary: to give visibility, to share scientific and social information, to increase knowledge about hemophilia and the other rare bleeding diseases. For this reason, the editorial staff wanted this time to change the typology of the magazine and of the articles: they are focused not on scientific research, or on the description of medical and therapeutic experiences, or on clinical cases, but on the activities of the associations of patients with hemophilia.
OJHM vol. 2 num. 2 - Sharing experience regarding hemophilia: the activities of a local hemophilic association
Born from the need to establish sharing relationships between families with haemophilic children and with haemophilic adults, the Haemophilia Association of Reggio Calabria has always moved around the area trying to use all the possible resources it provides. Meetings were organized between families to share their experiences and their own experience with the disease. Meetings between families and expert mediators and psychologists to understand better how to explain the existence of the disease to their children and face the difficulties of everyday life. The children related to each other, sharing the experience of growing up, of facing a reality that is not always the same as that of others.
OJHM vol. 2 num. 2 - Promoting and facilitating the wellbeing and quality of life of people with hemophilia and other bleeding disorders
M. Cruz Ramírez
The Federation of Hemophilia of the Mexican Republic (FHMR) is a non- profit organization formed by and for people with hemophilia and other inherited coagulation disorders. It seeks to improve access to comprehensive health and encourage greater participation of society, generating public opinion and conscience through various activities. For 30 years, the FHMR has been working with altruism and professionalism with the aim for people living with hemophilia and other coagulopathies in our country to have adequate treatment, regardless of the health institution in which they are cared for.
OJHM vol. 2 num. 2 - Ensuring a better quality of life for people with hemophilia and other bleeding disorders in Panama
Panamanian Foundation of Hemophilia has the mission to be the organization that is committed, promotor, and guarantor of comprehensive care for people with Hemophilia, Von Willebrand and other congenital coagulopathies at the National level. As a Foundation we have had many challenges and difficulties. The greatest challenge we have been facing since the end of 2019 and the beginning of 2020 with the appearance of Covid-19 is the closure of many institutions. During this time, the focus of the Ministry of Health were matters related to COVID-19, leaving behind the other coagulopathies without any attention and many without treatment.