The World Federation of Hemophilia (WFH) Twinning Program was developed to improve hemophilia care in emerging countries through a formal, two-way partnership between two hemophilia organizations, treatment centres and youth groups for a period of up to four years. Every year, the WFH presents awards to two twins for their contributions to the community—one twin from the Hemophilia Treatment Centre Twinning (HTC) Program and one from the Hemophilia Organization Twinning (HOT) Program.
The WFH is proud to announce that the 2018 HOT Twins of the year are Kenya – Scotland, and the 2018 HTC Twins of the year are Abidjan (Ivory Coast) – Brussels (Belgium). Both Twins of the year showed exemplary dedication to furthering the objectives of the Twinning Program and promoting the WHF vision of Treatment for All.
The HOT Twins of the year—Haemophilia Scotland and the Kenya Haemophilia Association—implemented many activities in Scotland, including training on the following: general challenges facing patient organizations in the bleeding disorders community, youth empowerment, women and bleeding disorders, and the legal rights of the disabled. Furthermore, 30 young patients participated in a youth leadership mentoring meeting.
“As a growing program, the Twinning Program with Haemophilia Scotland opened us up to better opportunities and a feeling of togetherness. The two associations remain fully committed and challenged to demonstrate mentorship in all spheres of care to PWH,” said Kibet Shikuku, MD, President of the Kenya Haemophilia Association. Dan Farthing, Senior Executive Officer of Haemophilia Scotland agrees: “The strength of our organisational twinning with the Kenya Haemophilia Association is that we quickly established that we are both dealing with similar organisational and strategic challenges. We feel we are learning from one another and we both share a determination to make sure the twinning makes a real difference.”
The HTC Twins of the year—CHU de Yopougon, Unité d’Hématologie and the Cliniques Universitaires Saint-Luc, Unité d’Hémostase-Thrombose—also implemented many productive activities in 2018. These included sessions on adapted educational tools for patients with a bleeding disorder (PWBD) and carriers; physiotherapy training; and several other multidisciplinary trainings. In one case, 80 PWBD and 42 carriers and their families attended a multidisciplinary visit on individualized therapeutic recommendations given by two experts.
Carriers were provided with recommendations in the event of pregnancy, as well as education on screening to perform in the case of a male child. The HTC twins facilitated dental care for ten PWBD, and helped implement low dose prophylaxis for 17 young children.
On behalf of the WFH, congratulations to the 2018 Twins of the year!