About the organisation
Basic details : Our Association is organized as a non-profit association (ASBL). Our articles of association are published in the Annexes of the Belgian Official Gazette and we are recognised by the Federal Public Finance Service for the tax deductibility of donations.
The General Assembly of Full Members is composed of about thirty people who form the decision-making body of the Association. Full members are all volunteers. They meet at least once a year to audit the accounts, vote the budget, determine a general strategy and policy for the Hemophilia Association, elect the members of the Board of Directors. Some full members participate very actively in the activities of the Association, either by participating in information meetings for patients, by writing or translating texts for our publications or for the website, by being instructors at educational and sports camps,...
The Board of Directors of the Hemophilia Association is composed of eight members in 2012, including a President, a Vice-President, a Treasurer, a Secretary, a Managing Director and four Directors. All these mandates are voluntary, without exception. These persons, who have their own professional activity independent of the Association, manage the daily life of the Association and represent it, in particular, before the public authorities when it comes to defending our interests in the field of medical treatment.
At least once a year, all Belgian therapists for haemophilia and rare blood coagulation diseases are invited by the Association de l'Hémophilie to a "Scientific Council". This meeting is the only opportunity for hemophilia specialists to meet in Belgium with a single agenda for hemophilia and its care in our country. This Scientific Council allows us to discern all the priorities and to defend them at the highest level of the State.
To ensure the daily management of the Hemophilia Association, the Board of Directors relies on a coordinator, a part-time employee of the non-profit association. The latter is responsible for coordinating the work of the Association, divided between the volunteer directors and the other volunteers of the Association. It manages the organization of patient meetings, the administration of educational and sports internships, the publication of the Association's publications and the maintenance of the website.
Mission : The Association of Hemophilia in Belgium represents the interests of patients in terms of treatment and medical care with public health officials.
Our association defends with the Government and the National Institute of Disability Health Insurance (INAMI) the accessibility of the most modern hemophilia treatments. All the major advances in hemophilia treatment are tenaciously defended, whether in terms of coagulation factors or centers of expertise.
The Association collects as much statistical data as possible to provide concrete evidence on the benefits of modern treatments in terms of patient health and well-being. We are constantly working hard to increase contacts at the highest level of Public Health.
Vision : Treatment of hemophilia worldwide