Association française des hémophiles, Beyond the Number!

Founded in 1955, the French hemophilia association (AFH) represents people affected by rare bleeding disorders (RBD): hemophilia, von Willebrand disease, platelet disorders and other rare bleeding disorders.

People with rare bleeding disorders such as hemophilia have a malfunction that prevents their blood from clotting normally. This causes them to bleed for longer periods of time and to bleed spontaneously from joints, muscles or other parts of the body.

These bleeding episodes can lead to permanent mobility problems. When patients are not treated properly or not diagnosed, musculoskeletal damage and other complications gradually develop until the young person's prognosis becomes life threatening.

In France, 15,000 people are estimated to be affected by a defective coagulation process. AFH is working to improve the quality of life of all these people and eventually cure hemophilia and RBD. Since the contaminated blood affair in the 1980s, AFH has been working to ensure safety, quality and access to care and treatment for all.

Without treatment, people with severe forms of hemophilia and rare bleeding disorders have a life expectancy of no more than childhood or adolescence. For those with less severe forms, they may have difficulty attending school or work regularly. They may be affected by physical disabilities and have difficulty walking or doing simple activities, and may die young.

Worldwide, 3 out of 4 people with hemophilia do not have access to treatment. HELP US ADVOCATE FOR THEM!

BUT WHAT EXACTLY DOES THE AFH DO ?

The French hemophilia association (AFH) has a role to play in informing, supporting and defending the rights of people with hemophilia, von Willebrand disease and constitutional bleeding disorders, and advocates for the constant improvement of knowledge, treatment and management of rare bleeding disorders. It is particularly vigilant on issues of treatment safety. It offers a training program on the issues of therapeutic patient education and health advocacy. It supports research and has developed an international aid program for rare bleeding diseases. In order to be as close as possible to the people concerned, it supports and accompanies its network of 22 chapters in France and its overseas territory.

AFH is recognised as being of public utility and is approved to represent users of the health system.

For more information on rare bleeding disorders, visit the Mhemo website

AFH IS NOT ALONE !

To strengthen its reach, AFH is a member of the World Federation of Hemophilia and the European Hemophilia Consortium. AFH participates in many inter-associative projects and is an active partner of public health organizations.

In general, the AFH acts on all aspects of daily life. Below are videos of the 2022 AFH National Congress in Lille where an overview of the topics is presented.

Committed to its mission of Informing and Carrying the voice of the rare disease community, AFH for several years has been supporting research through the financing of projects; training on the evolution and awareness of treatments; and organizing meetings between patients and researchers.

In our rich countries, people living with a rare constitutional bleeding disorder are more easily diagnosed than in developing countries. They also have easier access to preventive treatment to avoid irreversible damage. Only 15% of the world's population has access to hemophilia treatment and this population lives in rich countries! In Africa, access to these very expensive treatments is very difficult. Mortality is therefore high. Diagnosis is also very little practiced and developed.

Only 1% of people affected have access to hemophilia treatment in Africa!

Things change from one generation to the next: considered a danger by a whole generation, physical activity is now encouraged and presented as a real asset in the lives of people with the disease. Paul Arnould, vice-president of the AFH and head of the physical activity commission, talks to us about this subject.

Discover our website: www.afh.asso.fr

**For any information about the Solidarity Bibs, contact : **

Miassa Aimene - Fundraising, Administrative and Budgetary Officer miassa.aimene@afh.asso.fr - 07 83 38 26 56