“Together we are advancing research”: it is with pride that the French Association of Hemophiliacs (AFH) celebrates the success of its previous action on World Hemophilia Day (WHD) in 2013. Focused around the theme “All together for research to advance”, this day really enabled research toto evolve. “But it is still necessary to mobilize to achieve the objectives that we have set ourselves: to commit to supporting research by setting up in 2014 active fundraising to finance research programs”, recalls the association.
This year, events will take place all over France from April 5 to 27. This rare hereditary disease, which concerns about 15,000 people in France, remains little and poorly known to the general public. Patients suffer from coagulation disorders: during bleeding, the flow can not stop or very difficult. The consequences can be serious, ranging from severe bleeding to spontaneous bleeding, especially in the joints.
The hope of new therapies
At the beginning of the 19th century, a haemophiliac lived 12 years on average. Today, thanks to advances in medicine, he lives to be over 60 years old. Throughout the year, the AFH works with health authorities and health professionals to improve the quality of life of patients and their families.
New therapies still under study offer patients and their relatives the hope of an improvement in their daily lives by reducing the frequency of taking treatments, or even, in the more distant future, the hope of a cure, says the association. “It is today and now that we need you, that we must mobilize to help the AFH in its ambitions to cure rare diseases of hemostasis”, she concludes.
