‘Haemophilia Guidelines for All’: A new ambition of the World Federation of Haemophilia (WFH) (2020)

‘Treatment for all’ is the vision statement of the World Federation of Haemophilia (WFH) which works to improve and sustain care for people with inherited bleeding disorders around the World. 2020 sees the publication of the third edition and latest edition of the WFH haemophilia guidelines, aimed at harmonising the delivery of haemophilia care worldwide.1 Initiated and sponsored by the Federation, the guidelines published as a supplement in the Haemophilia journal represent an extraordinary collaborative effort. It has involved many active members of the Federation and a large international group of expert healthcare professionals from diverse and complementary backgrounds. This third edition of the guidelines is comprehensive and based on rigorous methodology. It is driven by the ambition to improve the overall care, treatment and quality of life of patients with inherited bleeding disorders around the world. The guidelines provide a unique resource of practical, detailed yet concise, holistic and accessible recommendations. The publication of these guidelines is timely. Never before has so much development been accomplished in such a short time in either the diagnosis or treatment modalities of inherited bleeding disorders. The success of the WFH's humanitarian donation programme has allowed access to treatment to an unprecedented number of patients. Never before has there been such a strong mobilization within the WFH, its national member organizations and many haemophilia health professionals to raise awareness of inherited bleeding disorders and improve their management. Such guidelines are essential for the haemophilia community. They form a foundation for the daily practice and serve as a major resource for any multidisciplinary haemophilia centre, regardless of its location and resources. It is hoped they will support and motivate health professionals in their daily efforts to provide high-quality care and contribute to its improvement. Above all, they should help guarantee access to care that incorporates recent diagnostic and therapeutic developments for all patients globally. The success of these guidelines will depend on their wide and effective dissemination. Their translation into several languages, the use of various communication tools such as the WFH website and other social media, the development of short versions that are easy to capture and implement should aid this. The approval and support of several health professional and the many WFH national member organizations will help inform and raise awareness in the community. Their adoption will be another condition for their success. Many health professionals are certainly participants but it also actively involves patients. More than ever, and despite the constraints and burden of haemorrhagic diseases, each patient must be an actor in his or her own disease, informed and ambitious. The many recommendations only make sense if the patients and their families fully assume their responsibilities. This involves adherence, motivation to understand the disease, participation in data collection and contribution to research initiatives. Some will undoubtedly question the scientific validity of many of the recommendations that are based on limited studies with an imperfect design. This criticism, even if well-founded and not infrequent in the area of rare diseases, cannot compromise the relevance of the document. Unlike guidelines in common conditions with a plethora of randomized clinical trials, there is a paucity of these when it comes to rare diseases. The proposed recommendations are the result of a rigorous review of the literature analysed by experts. They were also guided and inspired by their extensive practical experience. The guideline development group included patient representatives, the primary stakeholders. These recommendations have the merit of providing clear guidance for those who care for patients throughout the world and who are often faced with difficult decisions and choices. As current and past editors, we are pleased that the Haemophilia Journal and the publisher Wiley will contribute to their dissemination. Experience from previous editions has shown that the WFH guidelines are the most read, cited and downloaded article published in the Haemophilia Journal. We hope that this new edition will be as well received and successful. These guidelines should help amplify the collaborative success of the WFH and the Haemophilia Journal for the good of the entire haemophilia community. The authors stated that they had no financial interests which might be perceived as posing a conflict or bias. They are the current and past editors of the Haemophilia journal.