1. IHTC Fellowships Program: ApPLY NOW

2. Advocacy / Skills Development
Build capacity of our national member organizations (NMO) to serve the inherited bleeding disorders community
Advocacy / Skills Development

3. BUILDING CAPACITY OF AND EMPOWERING NMOs
HOT Twinning
Advocacy in Action
WFH Youth Fellowship program – Susan Skinner Memorial Fund
NMO Skills Training
WFH Youth Leadership Program
Accreditation program
HOT Twinning
Advocacy in Action
WFH Youth Fellowship program – Susan Skinner Memorial Fund
NMO Skills Training
WFH Youth Leadership Program
Accreditation program

4. The twinning program

5. twinning program
The WFH Twinning Program creates short-term collaborative partnerships between medical professionals and patient leaders in developing and developed countries
Both hemophilia treatment centres and patient organizations can participate in this program
Established in 1994
212 Twinning Partnerships in total

6. TWINNINGs in africa HTC TWINS IN AFRICA HOT TWINS IN AFRICA
2014 Abuja (Nigeria) – Chicago (USA)
2014 Bamako (Mali) – Montpellier (France)
2014 Dar esSalaam (Tanzania) – Pittsburgh (USA)
2014 Kampala (Uganda) – London (UK)
2015 Abidjan (Ivory Coast) – Brussels (Belgium)
2015 Lome (Togo) – Toulouse (France)
2016 Addis Ababa (Ethiopia) – Detroit (USA)
2016 Enugu (Nigeria) – Philadelphia (USA)
HOT TWINS IN AFRICA
2013 Mauritius – South Africa
2013 Nigeria – United States of America
2014 Tanzania – Ontario (Canada)
2015 Togo – Midi-Pyrénées (France)
Abuja– Chicago : Abuja National Hospital – Rush University Medical Centre/ Enugu– Philadelphia: National Enugu Hospital - PENN University
Bamako– Montpellier : Centre Hospitalier Universitaire Point G – Hopital Saint Eloi
Dar es Salaam– Pittsburgh : Muhimbili National Hospital – Hemophilia Centre of Western Pennsylvania
Kampala – London: Mulago Hospital – Great Ormond Street Hospital for Children
Abidjan – Brussels : CHU de Yopougon – Haemophilia Center, Cliniques universitaires Saint-Luc
Lome– Toulouse : Centre Hospitalier Universitaire Sylvanus Olympio – Hôpital Purpan Centre Régional d'Hémophilie
Addis Ababa – Detroit : St. Paul’s Hospital Millennium Medical College - Karmanos Cancer Center HTC

7. Education, Training, and Communications
Share knowledge and build awareness globally through information exchange, education, and training
Education, Training,
and Communications

8. SHARING KNOWLEDGE AND BUILDING AWARENESS
WFH World Congress
Musculoskeletal Congress
Publications & Educational Resources
World Hemophilia Day
WFH Membership Program
WFH Websites
Haemophilia Journal (Wiley)
eLearning Platform and Content
Multidisciplinary Training Workshops
WFH World Congress
Musculoskeletal Congress
Publications & Educational Resources
World Hemophilia Day
WFH Membership Program
WFH Websites
Haemophilia Journal (Wiley)
eLearning Platform and Content
Multidisciplinary Training Workshops

9. WFH EDUCATIONAL RESOURCES
Over 300 publications
now available in:
Hemophilia
von Willebrand Disease
Rare Factor Deficiencies
Inherited Platelet Disorders
Treatment Products
Diagnosis
Inhibitors
Women with Bleeding Disorders
Data Collection
Advocacy Tools
Assessment Tools
Treatment Guidelines
English
Spanish
French
Arabic
Russian
Simplified Chinese
Japanese
WFH Educational Resources include:
Hemophilia
Von Willebrand Disease
Rare Factor Deficiencies
Inherited Platelet Disorders
Treatment Products
Diagnosis
Assessment
Tools
Health
Economics
Data Collection
Advocacy Tools
Inhibitors
Treatment Guidelines

10. GUIDELINES IN MULITPLE LANGUAGES

11. WFH ONLINE RESOURCES

12. WFH LOCALIZED WEBSITES
The WFH website is now available in Russian, Simplified Chinese, and Arabic. A Japanese version of the WFH website will be launched in April 2016.

13. Research and Enhanced Data Collection
Define and promote practice standards, collect data, and support clinical research to provide evidence to make the case for better care
Research and Enhanced Data Collection

14. WFH Research program Encourage and support clinical research
Build evidence base
Establish standards of care
Support advocacy aimed at improving access to care
Improve clinical management of patients
The WFH Research Program aims to encourage and support clinical research in inherited bleeding disorders
With good quality research, we will have better evidence to establish standards of care, improving clinical outcomes for patients and supporting advocacy efforts

15. Clinical Research Grant Program Epidemiological Research Program
WFH RESEARCH PROGRAM
Two components:
Clinical Research Grant Program
Epidemiological Research Program
Epidemiological Research Program
Clinical Research Grant Program

16. CLINICAL RESEARCH GRANT PROGRAM

17. CLINICAL RESEARCH GRANTS PROGRAM
Provides support for international clinical research relating to inherited bleeding disorders
The WFH Clinical Research Grants Program provides support for international clinical investigation relating to inherited bleeding disorders. The aim is to help create better evidence for the clinical management of hemophilia A and B, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

18. CLINICAL RESEARCH GRANTS PROGRAM
Selection criteria
Soundness of study design
Clinical significance
Novelty
Feasibility
Investigator/Research environment

19. CLINICAL RESEARCH GRANTS PROGRAM
Application cycle and deadlines
Step 1: Submission of letter of intent
February 1, 2017
Announcement of shortlisted LOIs 
March 15, 2017
Step 2: Submission of full research project 
May 15, 2017
Announcement of Grant recipients
End of July 2017

20. WFH EPIDEMIOLOGICAL RESEARCH PROGRAM

21. The NEED
Better evidence to support current practices in management of hemophilia
Large population data for epidemiological and outcomes research
Improvement of clinical management and support advocacy initiatives
The 2012 WFH Guidelines for the Management of Hemophilia identified areas where the evidence to support current practices in the management of patients with hemophilia is weak. Large population studies are needed to answer questions regarding the correlation of treatment and outcome, which is especially challenging with a rare disease. Such evidence would not only improve the clinical management of hemophilia but would also support advocacy initiatives aimed at improving access to care.

22. WORLD BLEEDING DISORDER REGISTRY (WBDR)
Develop a global database of high-quality, observational data collected on a large population of people with hemophilia
The World Bleeding Disorder Registry (WBDR) is a global database of high-quality, observational data collected on a large population of people with hemophilia (PWH). This data will be used to advance the understanding of hemophilia worldwide.
The WBDR aims to facilitate research by sharing data with the scientific community, allowing them to address important scientific and clinical issues, such as:
Address gaps in evidence related to patient management practices for patients with hemophilia
Support advocacy initiatives aimed at improving diagnosis and access to care around the world
Allow the scientific community to address important clinical questions on diagnosis, access to care, treatment, and outcomes in patients with hemophilia

23. Pilot Project Assessment
Pilot study
Start of Pilot Project
End of Pilot Project
Pilot Project Assessment
Launch of Full WBDR
April 2016
December 2016
January 2017
Summer 2017
To assess the feasibility of implementing an expanded WBDR in HTCs around the world

24. Wfh humanitarian aid program

25. WFH Humanitarian Aid program
The WFH Humanitarian Aid Program channels the world’s largest supply of donated clotting factor concentrates
Since 1996, 322 million IUs to 90 countries, helping over 100,000 people directly who are in urgent need
: Expansion of the program includes 500 million IUs over 5 years of a predictable supply, permitting planning and forecasting for the first time
The WFH Humanitarian Aid Program channels the world’s largest supply of donated clotting factor concentrates
Since 1996, 322 million IUs to 90 countries, helping over 100,000 people directly who are in urgent need
Over 500 million IUs over the next 5 years

26. WFH Humanitarian Aid Program: Past and future
Past: Unpredictable small amounts of often short dated product
Future: sustainable, predictable supply in various assay sizes with long shelf life
Possibilities: surgeries, low dose prophylaxis in children, reliable on demand treatment, immune tolerance therapy
Substantial sustainable supply permits:
HTCs to develop treatment plans for patients
Governments to commit funds and plasma product purchases
The global reality is that the lack of access to clotting factor concentrates in developing countries presents an urgent need and important public health challenge
Globally 1 in 1000 people have a bleeding disorder and a vast majority of these people still receive very inadequate care or no treatment at all.
A vast majority of them live in areas where there is limited access to diagnosis and treatment.
Due to lack of treatment, people with severe hemophilia in these countries often do not survive to adulthood, if they do survive they face a life with severe disability, isolation and chronic pain
This young boy is from Nigeria
He had an intracranial hemorrhage and went into a coma
We managed to quickly send the necessary product that stopped the bleeding in his head, which luckily led to a complete recovery
If Nigeria had a steady and predictable supply of products, they would not have had to wait for such an emergency donation

27. WFH Humanitarian Aid 1996: WFH Humanitarian AId Program launched 2012:
Yearly average of ~20 million IUs per year :
Agreements signed for Project Recovery and Project Wish :
Launch of predictable donations in partnership with Biogen and Sobi of 100 million IUs per year, for five years

28. THANK YOU NA GODA