Transcript Slide 1

ROLE OF THE WFH, IN
ACHIEVING
TREATMENT FOR ALL
Nairobi, Kenya
June 26, 2013
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) since1969
• 122 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 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
STRATEGIC THEMES 2012-2014
1. 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 underrecognized 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
5. PROMOTING THE QUALITY, SAFETY, AND
STANDARDS OF CARE
• 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
6. EXPAND OUR FINANCIAL BASE AND SUSTAIN
OPERATIONAL EXCELLENCE
• 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
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
THE WINNING COALITION!
• Patients & their families
• Health care professionals
- Physicians
- Nurses
- Orthopedists - Physiotherapists
- Dentists
- Lab Technicians
• Governments / Health Ministries
● Industry
• Regulators
- Hospitals
- Social Workers
- Blood Services
THANK YOU WFH
MERGER AVEC SLIDE 1
MARIA C. ARANGO
Program Officer
World Federation of Hemophilia