1. WFH WORK IN NIGERIA ENUGU, NIGERIA AUGUST 2014 Assad Haffar Deputy Programs Director 2012

2. THE GLOBAL LEADER IN INHERITED BLEEDING DISORDERS International NGO WHO Unique: all stakeholders

3. WFH GLOBAL REACH (2014) 127 countries

4. WORLD FEDERATION OF HEMOPHILIA

5. OUR VISION: TREATMENT FOR ALL One day, all people with bleeding disorders will have proper care, no matter where they live: Proper diagnosis and management Safe, effective treatment products Service for all bleeding disorders

6. OUR WORK Establish sustainable care in developing countries Promote quality, safety standards Provide training, education and capacity building Enhance patient empowerment

7. PREVALENCE OF BLEEDING DISORDERS Hemophilia A and B 400,000 people 200,000 severe 172,373 known to WFH –142,205 FVIII –28,008 FIX Von Willebrand − 6,000,000 people − 66,144 known to WFH Very rare bleeding disorders – non FVIII, FIX, VWD − 35,549 known to WFH - no global estimate Source: WFH 2012 Annual Global Survey

8. IDENTIFIED PATIENTS – REGION

9. GLOBAL VIEW 70% of people born with hemophilia are not diagnosed Adequate treatment is available to about 25%; The other 75% face pain, isolation and early death The majority of people with hemophilia in developing countries die before age 20 Living with haemophilia in this situation is like travelling in the dark without a light’ Megan Adediran

10. THE OPPOSITE PICTURE/DEVELOPING WORLD Hemophilia is unidentified/under diagnosed Basic Coagulation tests Patients suffer from early death/severe disabilities Primitive Blood Transfusion Services Bleedings are treated by whole blood/FFP/Cryo I have seen only 4 cases of hemophilia in the last 20 years. Diagnosis was mainly clinical, and supported by an isolated APTT, no reagents for factor assay. They were treated by fresh whole blood and FFP. The equipment to prepare cryoprecipitate is not working. A hematologist from Tanzania

11. WFH WORK IN THE AFRICAN REGION Step 1: Promote the establishment of hemophilia groups Step 2: Accredit the new groups as WFH National Member Organizations (NMOs)

12. JOINING THE WFH 1970: South Africa 1972: Nigeria 1977: Kenya 1988: Zimbabwe 1996: Senegal, Sudan 2004: Botswana, Eritrea Only 4 countries 20 years ago 14 new countries in the last 10 years 2006: Lesotho 2008: Cameroon, Ivory Coast 2010: Ethiopia, Ghana, Tanzania 2012: Mauritius, Uganda 2014: Mali, Mauritania, Togo, Zambia

13. WFH WORK IN THE AFRICAN REGION Step 3: Support the National Member Organizations Hemophilia Organization Twinning (HOT) NMO training programs Coalition with health professionals Ongoing relations with government Good governance o Board developments o Volunteers o Education o Fundraising

14. Hemophilia Foundation of Nigeria with National Hemophilia Foundation (USA) NHF ASSESSMENT VISIT IN 2012

15. WFH WORK IN THE AFRICAN REGION NMO Board Training National (Nigeria 2013 and 2014) Regional (Cape Town 2009, Barcelona 2011, Dubai 2012 and 2014) Global (at Congress)

16. WFH WORK IN THE AFRICAN REGION Step 4: Support health professionals in the country Hemophilia Centre Twinning o 16 medical twinning partnerships in the last 12 years Medical training fellowships, 37 in the last 12 years In-country training programs Regional trainings (lab, nurses, physiotherapy)

17. REGIONAL PHYSIOTHERAPY TRAINING, KENYA 2011

18. REGIONAL NURSES TRAINING, KENYA 2013

19. REGIONAL WEST AFRICA LABORATORY DIAGNOSIS TRAINING WORKSHOP/ DAKAR, SENEGAL

20. WFH WORK IN THE AFRICAN REGION Step 5: Help the country to develop a National Hemophilia Care Program Country Programs Global Alliance for Progress (GAP) South Africa (2011) Cornerstone Initiative Nigeria (2013) Ethiopia (2014)

21. GAP PSYCHOSOCIAL TRAINING, SOUTH AFRICA

22. MULTIDISCIPLINARY SYMPOSIUM Abuja, NIGERIA 2013

23. LABORATORY DIAGNOSIS TRAINING WORKSHOP Abuja, NIGERIA 2013

24. PHYSIOTHERAPY TRAINING WORKSHOP, ETHIOPIA

25. The Cornerstone Initiative 2013-2022

26. THE CORNERSTONE INITIATIVE 2013-2022 Through training the WFH will lay the foundation cornerstone upon which future building and development may occur Targeted to underserved and impoverished regions of the world Designed to develop basic care –Develop or improve diagnosis capacity –Provide basic training in the management of bleeding disorders –Strengthen patient organizations

27. CORNER STONE YEAR 1, NIGERIA Organize laboratory training 20 lab technicians from 7 cities participated in this 3 day laboratory diagnosis training workshop Organize Basic training for front line doctors and health professionals 247 attended a one day training session on hemophilia care which was awarded CME credits by the Nigeria Medical Association

28. CORNER STONE YEAR 1, NIGERIA Organize training for Board of Nigeria Hemophilia Foundation 9 Board members attended a one day training on strategic planning where 4 strategic objectives were identified for the coming 2 years –Improve fundraising –Improve availability of CFCs –Increase public awareness –Recruit volunteers

29. WFH WORK IN THE AFRICAN REGION Step 6: Support some countries with product donations Product donations to Nigeria –2014: 400,000 IU –2013: 450,000 IU –2012: 1,000,000 IU –2011: 800,000 IU –2010: 350,000 IU A total of 3 million international units over the last 5 years A detailed report on utilization is mandatory. Failing of providing reports will stop future donations

30. WFH WORK IN THE AFRICAN REGION Step 7: Create Cooperation between different countries in the African region South Africa Senegal Kenya

31. REGIONAL COOPERATION Togo Visit of Dr. Diop from Senegal to Lome, Togo and meeting with hemophilia community

32. WFH WORK IN THE AFRICAN REGION ESTABLISH SUSTAINABLE CARE IN DEVELOPING COUNTRIES The WFH Development MODEL 1.Ensuring accurate diagnosis and good Management 2.Achieving government support 3.Improving care delivery system 4.Increases treatment product availability 5.Building strong patient organizations 6.Enhancing data collection & outcomes research

33. THE FUTURE Try to work with Nigerian Ministry of Health in order to establish a National Hemophilia Care Program Establish a second medical twinning partnership between Lagos and Philadelphia (USA) Establish a comprehensive team in the Hemophilia Treatment Centres in all major cities Provide proper training to all team members

34. THE FUTURE Support Hemophilia Foundation of Nigeria (HFN) outreach programs in order to identify new patients Support the labs in the HTCs in major cities with proper training, quality control and reagents in order to do the diagnosis of new patients Increase donations of Clotting Factor Concentrates (CFCs) to Nigeria in order to reach 3-4 million IU per year Support Nigeria to become major target country in the future WFH African initiative

35. UNITED TO ACHIEVE TREATMENT FOR ALL WFH National Member Organizations WFH committee members & volunteers Healthcare professionals Public health officials Industry partners Donors WFH executive committee members WFH staff