Association française des hémophiles, Beyond the Number!

Founded in 1955, the French Hemophilia Association (AFH) represents individuals affected by rare bleeding disorders (RBDs), such as hemophilia, von Willebrand disease, platelet disorders, and other rare coagulation disorders.

People with rare coagulation disorders, like hemophilia, suffer from a malfunction that prevents their blood from clotting properly. This results in prolonged bleeding and spontaneous bleeding into joints, muscles, or other parts of the body. These bleeding episodes can lead to permanent developmental and mobility issues. Without proper diagnosis and treatment, patients may develop musculoskeletal damage and other complications that can become life-threatening, particularly for young people.

In France, it is estimated that more than 15,000 people are affected by faulty coagulation processes. AFH works to improve the quality of life for all these individuals and, ultimately, to cure hemophilia and other RBDs.

Since the contaminated blood scandal of the 1980s, AFH has been committed to ensuring the safety, quality, and accessibility of care and treatment for all. Without treatment, people with severe forms of hemophilia and rare bleeding disorders have a life expectancy that does not exceed childhood or adolescence. In France today, people are diagnosed early enough to allow them to have a life expectancy similar to the average population. However, AFH continues to fight to reduce diagnostic delays across the country so that those affected can be treated as early as possible.

For those with less severe forms of the disorder, if left untreated, they may struggle to attend school or work regularly. They risk developing physical disabilities, difficulty walking, or engaging in simple activities, and they may die young in countries where access to care is limited.

Globally, 3 out of 4 people with hemophilia do not have access to treatment.

HELP US ADVOCATE FOR THEIR CAUSE!

WHAT EXACTLY DOES AFH DO?

The French Hemophilia Association (AFH) plays a role in providing information, support, and defending the rights of people with hemophilia, von Willebrand disease, and congenital bleeding disorders. AFH advocates for continuous improvement in knowledge, treatments, and management of rare coagulation disorders. It pays special attention to the safety of treatments and offers a training program on the challenges of patient therapeutic education and health advocacy. To be closer to those affected, AFH supports and assists its network of 22 committees across mainland France and overseas territories.

AFH is recognized as a public interest organization and is approved to represent healthcare system users. For more information on rare bleeding disorders, visit the Mhemo network website.

ACTIONS MADE POSSIBLE THANKS TO YOUR PARTICIPATION IN THE UTMB:

• Sport Hemophilia Festival: A weekend of exchange for the whole family to raise awareness about the importance of regular physical activity, regardless of age. AFH strives to promote adapted physical activity for balance and well-being but, more importantly, for the protection of the joints of people affected by RBDs.

• Summer Camps: For children living with RBDs, AFH is committed to offering summer camps to children who are often denied access to “regular” camps. Treatment management is a concern for many organizations, but AFH camps feature a medical team and offer therapeutic education sessions for patients, providing peace of mind to families!

Check out our website:  www.afh.asso.fr

For information about Solidarity Race Bibs, contact:

Mélanie Babe - Communication Manager - melanie.babe@afh.asso.fr