Supporting patients with haemophilia in a world of crises: New role for the WFH and its partners.

The last few decades have been marked by major advances for people with haemophilia. They concern the understanding of the mechanisms, diagnosis, treatment and care of clotting factor VIII and IX deficiencies and other inherited bleeding disorders. [...

Theory of change and strategic priorities of the world federation of haemophilia.

The World Federation of Haemophilia (WFH) is a global network of national member organizations (NMOs) that advocate, collectively and individually, to improve lives of people with inherited bleeding disorders. The WFH vision of "Treatment for All" speaks to a future in which all people with an inherited bleeding disorder will have access to care, regardless of their gender or where they live. Over the last several years, initiatives including the WFH Humanitarian Aid program, the World Bleeding Disorders Registry, and Guidelines for the Management of Haemophilia and von Willebrand disease have significantly changed how the WFH and its partners work to improve and sustain care for people with bleeding disorders. Following an extensive consultation that included over 200 stakeholders from 70 countries, a Theory of Change was developed, and strategic priorities identified, to clearly define the WFH's intended impact and point of accountability to its stakeholders, and to determine how and through who those goals will be achieved. Both should help the WFH better support its NMOs and healthcare providers around the world in their efforts to improve access to diagnosis and care, as new therapies revolutionize the treatment landscape and the fallout of the global pandemic continues to challenge the ways in which we work and connect. Global collaboration of all stakeholders, based on their resources, objectives and skills, will be required to achieve these goals and to ensure more people have reliable access to safe treatment and care, regardless of their bleeding disorder, gender, or where they live.Free to Read (see URL

How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

International audienceIntroduction: There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low-income countries in the field of haemophilia is planned.Aim: To draft recommendations to clarify the methodology when a partnership between low- and high-income countries is planned with the objective of a long-term implication. This methodology is to be implemented for fulfilling both medical and associative aims.Methods: Based on the available literature, a first document was written, then diffused to AFATH (Alliance Franco-Africaine pour le Traitement de l'Hémophilie) members, and after a one-day meeting and further amendments, a second draft was approved by all members before submission for publication.Results: Based on 6 years experience, several recommendations regarding the joint and separate roles of patient association and HCP for a first mission in French-speaking sub-Saharan African countries have been established. The proposed methodology for establishing preliminary contacts, the first visit and the key points for diagnostic action, medical follow-up, patient education and advocacy strategy outlines a model of partnership between patients and HCP.Conclusion: This paper written jointly by patients and physicians underlines the importance of reciprocal expert guidance and a partnership based on complementary inputs