Nairobi, Kenya June 26, 2013 ROLE OF THE WFH, IN ACHIEVING TREATMENT FOR ALL

Role of the WFH

DID YOU KNOW? An estimated 1 in 1000 people has a bleeding disorder 268,030 people with bleeding disorders identified in the 2011 WFH Annual Global Survey 70% of people with hemophilia not diagnosed, 75% not treated Many will die young or grow up severely disabled

THE GLOBAL LEADER IN INHERITED BLEEDING DISORDERS International non-profit organization Official relations with World Health Organization (WHO) since national patient organizations Brings together all stakeholders: doctors, multidisciplinary care team, patients, governments, regulators, pharmaceutical companies

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 by a multidisciplinary team of trained specialists Safe, effective treatment products for all bleeding disorders Service for all bleeding disorders, including von Willebrand disease, rare factor deficiencies, inherited platelet disorders

OUR WORK Establishing sustainable care in developing countries Training healthcare professionals to properly diagnose and manage patients Building capacity of our member patient organizations to advocate for better care and effectively serve the community

OUR WORK Organizing the largest international meeting – WFH World Congress - dedicated to inherited bleeding disorders Promoting quality, safety, and standards of care Educating and empowering people with bleeding disorders to help them live healthier, longer, and more productive lives

WORLD FEDERATION OF HEMOPHILIA

WFH GLOBAL REACH

THE UNDERSERVED 9% of patients identified with a bleeding disorder worldwide are from countries with a GNI per capita of <$1,500 USD. This group of countries represents one third of the world’s population. Source: WFH Global Survey 2010

THE CORNERSTONE INITIATIVE 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

STRATEGIC THEMES Improving diagnosis and treatment in developing and emerging countries 2.Building the capacity of our National Member Organizations to effectively serve the bleeding disorders community 3.Enhancing diagnosis and access to treatment for under- recognized populations (including people with inhibitors, VWD, RBD, and inherited platelet disorders, particularly women with these disorders and carriers) 4.Sharing knowledge through information exchange, education and training 5.Promoting the quality, safety and standards of care 6.Expanding our financial base and sustain operational excellence

1.IMPROVING DIAGNOSIS AND TREATMENT IN DEVELOPING AND EMERGING COUNTRIES We continue to: –Establish national care programs –Implement targeted country development programs –Improve laboratory diagnosis –Advocate for an adequate supply of safe, effective replacement therapy –Assist in emergency situations by sending humanitarian aid donations of CFCs

THE WFH DEVELOPMENT MODEL 6 INTEGRATED COMPONENTS 1.Ensuring accurate diagnosis 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 (New component for 2013)

2.BUILDING THE CAPACITY OF OUR NMOS TO EFFECTIVELY SERVE THE BLEEDING DISORDERS COMMUNITY Equipping our member organizations and patient leaders to advocate for better care Continue to train and develop educational materials to meet the evolving needs of NMOs Supporting patient involvement Offering programs to members such as Global NMO Training, Youth Fellowship Program and Twinning Program

3.ENHANCING DIAGNOSIS AND ACCESS TO TREATMENT FOR UNDER-RECOGNIZED POPULATIONS Our vision of Treatment for All includes all people with bleeding disorders: VWD, rare factor deficiencies, inherited platelet disorders, women with bleeding disorders and carriers, people with inhibitors We will raise awareness, improve diagnosis and outreach, expand training and education, promote access to comprehensive care, including treatment products for these populations

4.SHARING KNOWLEDGE THROUGH INFORMATION EXCHANGE, EDUCATION AND TRAINING A key goal of the WFH is to foster global collaboration and sharing knowledge and information. We continue to do so through: –WFH congresses and meetings bringing together all stakeholders –Building strategic collaborations with mission-related organizations –Training of healthcare professionals –Online technologies and tools to raise awareness

SHARING KNOWLEDGE THROUGH INFORMATION EXCHANGE, EDUCATION, AND TRAINING 4000 participants from over 115 countries attending WFH congresses 550 IHTC fellowships awarded in 80 countries worldwide since inception of program; over 93% remain in clinical care five years post-fellowship 1,100 lab specialists and technicians trained 1 million visits to WFH website annually, 5238 Facebook fans 300 WFH publications in multiples languages, and 600,000 publications distributed annually online and in print

WFH RESOURCES

WFH continues to be a global watchdog monitoring safety and supply of treatment products and an advocate for improved safety and access WFH also provides leadership in: –Developing global treatment guidelines and standards of care that were endorsed by the ISTH –Enhancing data collection and outcome analysis –Monitoring new scientific developments –Supporting global research 5.PROMOTING THE QUALITY, SAFETY, AND STANDARDS OF CARE

In spite of challenging economic times, WFH has increased its corporate partnerships and funding - which support all our programs Going forward, we will continue to diversify our financial resources We will also focus on maintaining a high level of operational excellence and efficiency 6.EXPAND OUR FINANCIAL BASE AND SUSTAIN OPERATIONAL EXCELLENCE

CONCLUSION With 50 years of achievements, the WFH is well placed to further our vision of Treatment for All Our success relies on YOU - our global network of volunteers/health professionals and national member organizations (NMOs) that support our work and mission

Patients & their families Health care professionals -Physicians- Nurses- Hospitals -Orthopedists - Physiotherapists- Social Workers -Dentists - Lab Technicians- Blood Services Governments / Health Ministries Regulators ● Industry THE WINNING COALITION!

THANK YOU WFH

MARIA C. ARANGO Program Officer World Federation of Hemophilia MERGER AVEC SLIDE 1