Hemophilia is a rare genetic disease that results from mutations in the genes that code for proteins necessary for regular bloodline clotting, factor VIII (classical hemophilia) and Christmas factor (haemophilia B). Although there is evidence that the incidence of haemophilia is constant in different populations, there is a wide variation in the reported prevalence of hemophilia across countries. With 18% of the macrocosm's universe, Africa represents to a lesser degree 3% of patients known as having bleeder's disease, and only 2% of those apply clotting factor concentrates (CFCs) for treatment. IT is likely that these differences between countries are the result of differential capacities for prompt and accurate diagnosing and for the provision of care obligatory for survival. Diagnosis and care for hemophilia are heavily depending on the availableness of trained healthcare professionals and CFCs.

The World Federation of Hemophilia (WFH), an planetary nonprofit organization organization, has a mission to meliorate and sustain cherish people with heritable hemorrhage disorders around the mankind. WFH works nearly in partnership with hemophilia handling centers (HTCs) in 29 African countries to share knowledge and build orbicular consciousness through with information exchange, pedagogy, and grooming. WFH also provides ∼24 million units of CFCs per class to patients in sub-Saharan Africa through a human-centred aid course of study.

  • To build a large network of health care professionals (HCPs) in Africa who are well trained in hemophilia care.

  • To increase the number of multitude identified with hemophilia in hero sandwich-Saharan Africa.

  • To ameliorate haemophilia care in that region.

The WFH is an worldwide, Canadian-based not-for-profit health brass that was self-constituted in Montreal, Canada, in 1963 with a membership of 140 countries, and it is officially recognized by the World Health Organization (WHO). The WFH has been dedicated to improving hemophilia care worldwide for the last 56 years. Information technology has provided globular leadership in training experts in the field to properly name and manage patients, advocating for an adequate append of safe treatment products, and educating and empowering people with bleeding disorders on how to meliorate their quality of life.

  • The WFH will:

    • ○ Organize global educational and training workshops and support all financial and logistical issues.

    • ○ Award fellowships to kick in HCP staff training in the diagnosis and direction of hemophilia and other inherited hemorrhage disorders. The staff members travel to same of the designated International Hemophilia Grooming Centers (IHTCs) for 4 to 6 weeks of training in the nonsubjective, assay, and medical aspects of hemophilia management.

    • ○ Furnish rational and predictable access to school of thought care treatment to transfer the lack of access to CFCs

  • The WFH leave establish IHTCs in Black Africa (Dakar and Johannesburg) that are designated as handling centers committed to assisting other countries by providing fellowship training in caring for patients with bleeding disorders in accordance with WFH priorities. IHTCs are responsible for:

    • ○ Providing specific training for WFH fellows in caring for people with bleeding disorders;

    • ○ Arrangement supply support for WFH fellows, including accommodation, meals, and local transportation;

    • ○ Completing valuation reports on WFH fellowship trainings;

    • ○ Updating WFH Home bas on training results and feedback; and

    • ○ Monitoring replaceable IHTC course content.

  • Participants from complete Continent countries in which a Graeco-Roman deity team has been recognized as providing various levels of cherish hemophilia patients have an opportunity to be included in capacity construction programs and to benefit on a stone's throw-by-step basis. Regional and political entity workshops are organized within countries for more in-depth breeding via WFH philosophy tending (Hour angle) and programs specific to each country, severally.

  1. Creation of a large African network of HCPs who have been well trained in treating and caring for patients with hemophilia.

    • Workshops

      • ○ Thirty workshops were designed from 2016 to 2018 (Figures 1-3).

      • ○ These workshops were specific to the topics of medical brook, nurses, laboratory diagnosis, physiotherapy, and social support.

      • ○ There was a total of 600 participants during these 3 years from 29 African countries.

      • ○ Additionally, an African summit was formed in Senegal in 2017 and another in Johannesburg in 2019, with representatives from many African countries confluence to exchange best practices and gain further training.

    • Fellowships

      • ○ In all, 42 HCPs from 18 countries were awarded fellowships to be housebroken in IHTCs from 2016 to 2018; follow-aweigh appraisal shows that all the fellows continue to be spry in the field of hemophilia and bleeding disorders (Form 4)

  2. There was an increase in the number of people known with bleeder's disease in sub-Saharan Africa after having the program for 3 years (2016-2018).

    • An increase of 25.9% was seen in the total of identified patients with haemophilia A and hemophilia B from 4397 to 5540 during the 3 years 'tween 2016 and 2018. This growth was as wel observed for von Willebrand disease (increased from 722 to 759) and for other rare haemorrhage disorders (increased from 253 to 304). In total, the number of identified patients who had transmissible hemorrhage disorders increased from 5372 to 6603 (ie, a 22.9% increase; Figure 5).

  3. Thither has been considerable advance in hemophilia care in Sub-Saharan Africa between 2016 and 2018 (Work out 6).

    • The number of donated CFCs chromatic from 11 million international units (IUs) to a total of 80 million IUs betwixt 2016 and 2018. With increased entree to treatment and better breeding, the following improvements wealthy person been discovered:

      • ○ The keep down of patients treated with given CFCs increased from 1123 to 5501.

      • ○ The number of surgeries performed using these donations increased from 237 to 268.

      • ○ The number of acute bleeds treated victimization HA donations touched from 10 991 to 17 421, and

      • ○ The bi of patients WHO received prophylaxis exploitation Hour angle donations increased from 254 to 461.

Figure 1.

International Workshop participants, Dakar, April 2017.

International Workshop participants, Dakar, April 2017.

Figure 1.

International Workshop participants, Dakar, April 2017.

International Workshop participants, Dakar, April 2017.

Figure 2.

Didactic topics training and case report review.

Informative topics training and case report review.

Figure 2.

Didactic topics training and case report review.

Didactical topics training and case account review.

Figure 3.

Participants in practical laboratory training session.

Participants in practical laboratory training session.

Figure 3.

Participants in practical laboratory training session.

Participants in practical laboratory education session.

Figure 4.

Number of accepted IHTC fellows since 2016, by country.

Number of accepted IHTC fellows since 2016, by country.

Figure 4.

Number of accepted IHTC fellows since 2016, by country.

Number of accepted IHTC fellows since 2016, past nation.

Build 5.

Increase in the number of patients from 2016 to 2018 in sub-Saharan Africa.

Increase in the number of patients from 2016 to 2018 in Sub-Saharan Africa.

Figure 5.

Increase in the number of patients from 2016 to 2018 in sub-Saharan Africa.

Step-up in the number of patients from 2016 to 2018 in sub-Saharan Africa.

Figure 6.

Evolution of hemophilia treatment in sub-Saharan Africa from 2016 to 2018.

Evolution of hemophilia treatment in sub-Saharan Africa from 2016 to 2018.

Figure 6.

Evolution of hemophilia treatment in sub-Saharan Africa from 2016 to 2018.

Evolution of hemophilia discussion in sub-Saharan Africa from 2016 to 2018.

An array of capacity building assistance initiatives has led to expansion of a large and multinational network of wellness tending professionals with good noesis of how to name and treat hemophilia in patients who live in sub-Saharan Africa. It has allowed a good and competent change between North-South and South-South HCPs, and as a result of this collaboration, there has been an increase in the diagnosis and quality of treatment for people with haemophilia and other bleeding disorders. Capacity edifice was crucial in improving the prime of liveliness of populate with inherited haemorrhage disorders in sub-Saharan Africa.

Conflict-of-interest disclosure: The authors declare atomic number 102 competing financial interests.

Proportionateness: Saliou Diop, Hematology Department, Cheikh Anta Diop University and Centre Subject de Blood transfusion Sanguine, BP 5002 Capital of Senegal Fann, Dakar, Senegal; e-mail: saliou.diop@ucad.edu.tin.

© 2019 past The American Bon ton of Hematology

2019