ApPLY NOW wwwwfhorgengIHTCFellowshipProgram Build capacity of our national member organizations NMO to serve the inherited bleeding disorders community Advocacy Skills Development BUILDING CAPACITY OF AND EMPOWERING NMOs ID: 802018
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Slide1
IHTC Fellowships Program: ApPLY NOW
www.wfh.org/eng/IHTC_Fellowship_Program
Slide2Build capacity of our national member organizations (NMO) to serve the inherited bleeding disorders community
Advocacy / Skills Development
Slide3BUILDING CAPACITY OF AND EMPOWERING NMOs
Slide4The twinning program
Slide5twinning
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
Slide6TWINNINGs
in africa
HTC 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
)
Slide7Share knowledge and build awareness globally through information exchange, education, and training
Education, Training,
and
Communications
Slide8SHARING KNOWLEDGE AND BUILDING AWARENESS
Slide9WFH EDUCATIONAL RESOURCES
English
Spanish
French
Arabic
Russian
Simplified Chinese
Japanese
Over
300
publications
n
ow available in:
Slide10GUIDELINES IN MULITPLE LANGUAGES
Slide11WFH ONLINE RESOURCES
Slide12WFH LOCALIZED WEBSITES
Slide13Define 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
Slide14WFH Research program
Slide15WFH RESEARCH PROGRAM
Two components:Clinical Research Grant ProgramEpidemiological Research Program
Epidemiological Research Program
Clinical Research Grant Program
Slide16CLINICAL RESEARCH GRANT PROGRAM
Slide17CLINICAL RESEARCH GRANTS PROGRAM
Provides support for international clinical research relating to inherited bleeding disorders
www.wfh.org/crgp
Slide18CLINICAL RESEARCH GRANTS PROGRAM
Selection criteriaSoundness of study designClinical significance
NoveltyFeasibilityInvestigator/Research environment
Slide19CLINICAL RESEARCH GRANTS PROGRAM
Application cycle and deadlines
Step 1: Submission of letter of intentFebruary 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
Slide20WFH EPIDEMIOLOGICAL RESEARCH PROGRAM
Slide21The NEED
Slide22WORLD BLEEDING DISORDER REGISTRY (WBDR)
Develop a global
database of high-quality, observational data collected on a large population of people with hemophilia
Slide23Pilot study
April 2016
December 2016
January 2017
Summer 2017
Slide24Wfh humanitarian
aid program
Slide25WFH 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
2016-2020: Expansion of the program includes 500 million IUs over 5 years of a predictable supply, permitting planning and forecasting for the first time
Slide26WFH 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
Slide27WFH Humanitarian Aid
Slide28THANK YOUNA GODA