Revised ppt templates re branding

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  ???????? ???????????, services beyond hemophilia,
  to those with von Willebrand disease, rare factor
  deficiencies inherited platelet disorders.

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What is WFH?

• Non-Profit Organization Founded in 1963
• 113 National Member Hemophilia Organizations
• Volunteers
• - Doctors, Scientists, healthcare professionals
• People with hemophilia
• Executive Committee 14 members
• Headquarters in Montreal, Canada 27 staff

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WFH Members - National Member Organizations

• WFH recognizes any country accepted by United
  Nations or World Health Organization
• Only one organization can represent one country
• Must represent the best interests of majority of
  people with hemophilia and their families
• Patients have to be involved in the organization
• Similar goals to the WFH

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WFH Members National Member Organizations

• Ukrainian Hemophilia Society
• WFH member since July 21, 2000
• Pay membership fees
• Submit regular activity reports to WFH
• Actively participate in WFH affairs
• (vote at WFH General Assembly, participate in
  meetings and workshops, give feedback, etc.)

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Data Collection

• Collect accurate information on the number of
  people with hemophilia and von Willebrand disease
  
• Monitor the cost of treatment
• Measure the level of care available to people
  with bleeding disorders

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Data Collection

• WFH Annual Survey
• Since 1998
• Distributed through National member organizations
• Only global data on hemophilia available

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WFH Healthcare Development Programs

• Country Programs
• Workshops
• Medical Training Fellowships (International
  Hemophilia Training Centres)
• Twinning (Medical and Organizational)
• Hemophilia Organization Development
• Humanitarian Aid
• International External Quality Assessment Scheme
  for Laboratories (IEQAS)
• Global Alliance for Progress (GAP)

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WFH National Program - Objectives

• Main objective to improve aspects of hemophilia
  care
• Strong patient organization
• Coalition between the treaters and patients (NMO)
• Adequate diagnosis
• Comprehensive Care Centers with multidisciplinary
  teams
• Integrated into healthcare system
• Safe, Sufficient Replacement Therapy
• Get government support

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The Winning Coalition

• Dedicated treaters
• Strong patient group
• Government involvement
• Volunteers
• World Federation of Hemophilia

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WFH Training for Patient Organizations
Training Workshops to Improve Organizational
Skills

• Managing
• Lobbying
• Advocacy
• Fundraising
• Accounting
• Counseling
• Outreach

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Medical-Lay Cooperation Tunisia-Quebec twinning

• OBJECTIVES
• Share program and governance skills
• Improve the quality of information given to
  association members
• Share advocacy skills to increase factor
  availability
• Create a Medical and Scientific Committee
• Increase medical knowledge and skills
• Share French-language documents

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Lessons learned

• Availability of concentrates allows for easier
  discussions. No desperate need for basic care,
  its easier to work on both medical and
  organisational projects
• Cooperation between patients and treaters
  accelerates progress for treatment.
• Both sectors working together - patient and
  medical - opens doors

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Three perspectives on the same issue

• Patient and family
• Doctor / medical personnel
• National patient association

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Patients perspective

• Will I have sufficient medication?
• Does the doctor know what he is doing?
• I cannot choose another doctor
• What do I want? I want to resolve my problems
  and move on quickly.

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The doctors perspective

• Will I have sufficient medication to prescribe
  in an adequate quantity?
• Will the patient follow my advice?
• I cannot neglect the patient.
• If something happens to me, who will take over
  my role?

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The patient association perspective the bridge

• Will there be sufficient and adequate
  medication?
• Are the doctors doing everything possible?
• How do we support the key doctors?
• Do the doctors participate or interfere in the
  work of the patient association?
• Do the patients follow the advice of the doctors?

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Conclusions

• The first medicine for a patient is a good doctor
• Objectives must be unified to have success the
  health of the patient
• Planning is critical
• Relationships between patients and doctors must
  be fostered through the work of the patient
  association

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The Place of Patients

• Without the involvement of a strong organization
  to promote care development and to educate
  patients and their families, success is unlikely.
• National Program as part of a national
  programme, the WFH supports establishing a
  national coordinating body to oversee and ensure
  sustained and continued development of the entire
  spectrum of care.

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The Place of Patients

• Without the involvement of a strong organization
  to promote care development and to educate
  patients and their families, success is unlikely.
• Public Health Oversight Committees patients
  often adopt the role as guardian of the blood
  system.
• Selection of Treatment Products an increasing
  number of patient organizations now have a voice
  within their national tender process.

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Website www.wfh.org
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