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List of all projects in Americas

Brazil

Improvement of haemophilia organisation and patient education

  • Programme
    Improvement of haemophilia organisation and patient education
  • Partner
    Federaçao Brasileira de Hemofilia - FBH, Cuiaba
  • Represented by
    Dr Sylvia Thomas
  • Planned duration
    Three years, completed 2009
Objectives
  • Improve haemophilia infrastructure and treatment delivery with emphasis on eight regions
  • Support reorganisation of Brazilian Federation of Haemophilia (BFH)
  • Ensure better cooperation between regional BFH associations and their treatment centres (Hemocentros)
  • Educate patients, patient leaders, doctors and nurses
  • Establish two national laboratories and train laboratory technicians
Impact
  • BFH reorganised and strengthened
  • 28 patient leaders, 70 healthcare professionals, 200 patients and family members educated
Country information
  • Population
    203.5 million
  • Expected patients
    20,350
  • Known patients
    10,000
  • GDP per capita (USD):
    10,900
  • Health expenditure as % of GDP:
    7

Improve MSK status of people with haemophilia by measuring, analysing, disseminating and educating

  • Programme
    Improve MSK status of people with haemophilia by measuring, analysing, disseminating and educating
  • Partner
    IHTC “Luiz Cláudio Pizzigatti Correa”, Hemocentro UNICAMP, Campinas
  • Represented by
    Dr Margareth Castro Ozelo
  • Planned duration
    3 years, approved 2010, started 2011
Objectives
  • Establish guidelines and conduct surveys to build MSK database, evaluation, treatment and follow-up
  • Develop educational materials for patients, their families and healthcare professionals
  • Improve quality of life for patients through improvements in their physical, psychological and social well-being
Country information
  • Population
    203.5 million
  • Expected patients
    20,350
  • Known patients
    10,000
  • GDP per capita (USD):
    10,900
  • Health expenditure as % of GDP:
    7

Chile

National improvement of haemophilia treatment

  • Programme
    National improvement of haemophilia treatment
  • Partner
    Roberto del Río Hospital, Santiago
  • Represented by
    Dr María Mercedes Morales Gana
  • Planned duration
    Three years, started 2009
Objectives
  • Perform broad multidisciplinary educational programme to upgrade local treatment standards
  • Assess clinical, psychological and social patient status
  • Confirm laboratory status
  • Update national haemophilia registry
Country information
  • Population
    15.9 million
  • Expected patients
    1,690
  • Known patients
    1,359
  • GDP per capita (USD):
    15,500
  • Health expenditure as % of GDP:
    8.2

Cuba

Establishment of haemophilia comprehensive care

  • Programme
    Establishment of haemophilia comprehensive care
  • Partner
    Instituto de la Hematología e Immunología (IHI), La Habana
  • Represented by
    Prof José M. Ballester Santovenia
  • Planned duration
    Three years, completed 2011
Achievements - Infraestructure
  • IHI established as a national reference centre
  • Decentralised care set up through establishment of two regional haemophilia care centres in Villa Clara and Pinar del Rio
  • Outstanding results leading to Ministry of Health support in another two regions
Achievements - Training and Education
  • Material on haemophilia and treatment guidelines updated
  • Information material on haemophilia for patients and their families produced
Achievements - Diagnosis & registries
  • IHI provided with necessary equipment and reagents for accurate haemophilia diagnosis
  • National registry established at IHI including two other provinces
  • 1,553 people with bleeding disorders registered, of which 404 are people with haemophilia
Country information
  • Population
    11.1 million
  • Expected patients
    1,110
  • Known patients
    404
  • GDP per capita (USD):
    4,500
  • Health expenditure as % of GDP:
    11.8

Read the complete story of this project

Honduras

Epidemiologic Identification of People with Haemophilia in Honduras (EIPHH)

  • Programme
    Epidemiologic Identification of People with Haemophilia in Honduras (EIPHH)
  • Partner
    Hospital Escuela, Department of Paediatric Hemato-oncology, Tegucigalpa
  • Represented by
    Dr. Armando Peña Hernandez
  • Planned duration
    1.5 years, approved 2010, started 2011
Objectives
  • Establish reference coagulation laboratory in Tegucigalpa
  • Define epidemiological picture of haemophilia in Honduras and enter it into a newly created national database
  • Perform training for healthcare professionals and patients
  • Share project results and tools with health care providers
Country information
  • Population
    8.1 million
  • Expected patients
    810
  • Known patients
    260
  • GDP per capita (USD):
    4,200
  • Health expenditure as % of GDP:
    6

Mexico

Creation of a regional high-level paediatrician training centre - pilot project

  • Programme
    Creation of a regional high-level paediatrician training centre - pilot project
  • Partner
    Unidad Medica de Alta Especialidad, Hospital de Pediatria, Centro Medico Nacional Siglo XXI, Mexico City
  • Represented by
    Dr Roberto Bernáldez Ríos
  • Planned duration
    One year, started 2011
Objectives
  • Pilot project to improve regional haemophilia care
  • Establish comprehensive education centre at Siglo XXI to become a regional reference training centre
  • Develop treatment guidelines
  • Create an interactive website to assist health care professionals
  • Generate an updated patient registry
Country information
  • Population
    113.7 million
  • Expected patients
    11,370
  • Known patients
    4,700
  • GDP per capita (USD):
    13,800
  • Health expenditure as % of GDP:
    6.5

Desafio del Caribe

  • Programme
    Desafio del Caribe
  • Partner
    Asociación Venezolana de la Hemofilia (AVH) and Federación de Hemofilia de la República Mexicana (FHRM)
  • Represented by
    Cesar A. Garrido and Carlos Gaitán
  • Planned duration
    18 months, started 2011
Objectives
  • Prepare 10 swimmers from each country for a swimming competition through a comprehensive training programme developed by swimming specialists in collaboration with a multidisciplinary medical team
  • Regularly evaluate swimmers by a haematologist, physiatrist, orthopaedist and psychologist resulting in a scientific publication
  • Transfer knowledge and exchange experiences between both countries
  • Create awareness about the importance of exercise through media
Country information
  • Population
    113.7 million
  • Expected patients
    11,370
  • Known patients
    4,700
  • GDP per capita (USD):
    13,800
  • Health expenditure as % of GDP:
    6.5

Panama

Latin American haemophilia network – pilot project

  • Programme
    Latin American haemophilia network – pilot project
  • Partner
    Centro Nacional de Hemofilia, Panama City
  • Represented by
    Dr Belgica Moreno
  • Planned duration
    One year, completed 2011
Achievement - Training & education
  • Needs assessment tool developed with support of the Gulf States Haemophilia & Thrombosis Center in Houston
  • Two nurses trained in a patient camp in Houston to share their knowledge in several training sessions for patients in Panama
  • 60 odontologists trained in dental care of patients with bleeding disorders
  • Two day training by Dr Querol from the University of Valencia on evaluation techniques for 57 physiotherapists
  • 25 families benefited from the “Parent to parent educational programme” (PEP)
  • 20 teenage boys participated in a workshop especially designed for teenagers
Country information
  • Population
    3.5 million
  • Expected patients
    350
  • Known patients
    250
  • GDP per capita (USD):
    12,700
  • Health expenditure as % of GDP:
    8.3

Uruguay

Improvement of haemophilia care by awareness creation

  • Programme
    Improvement of haemophilia care by awareness creation
  • Partner
    Centro Hospitalario Pereira Rossell, Montevideo
  • Represented by
    Dr Ismael Rodríguez Greco
  • Planned duration
    One year, completed 2010
Achievements - Training & education
  • Plenary workshops carried out for healthcare professionals from whole country and patients with their families on a wide scope of topics such as sport, ‘to grow in health’, etc
  • Educational materials developed and distributed
  • Two summer camps held for children and adolescents, respectively
Country information
  • Population
    3.5 million
  • Expected patients
    350
  • Known patients
    202
  • GDP per capita (USD):
    13,100
  • Health expenditure as % of GDP:
    7.4

Venezuela

Desafio Orinoco 2010

  • Programme
    Desafio Orinoco 2010
  • Partner
    Venezuelan Haemophilia Association (AVH) and National Haemophilia Centre (CNH), Caracas
  • Represented by
    Dr Arlette Ruiz de Sáez and Cesar A. Garrido
  • Co-sponsored by
    Bayer Health Care in Venezuela
  • Planned duration
    One year, completed 2010
Achievements
  • Clinical evaluations showed the reduction of joint bleedings through increased muscle and improved movement angles of joints
  • Patients and supporters witnessed the increased self-esteem of the patients
  • The entire team completed the swim across the two rivers and extensive media coverage raised awareness of haemophilia and what people with haemophilia can accomplish
Country information
  • Population
    27.6 million
  • Expected patients
    2,760
  • Known patients
    1,723
  • GDP per capita (USD):
    12,600
  • Health expenditure as % of GDP:
    3.1

Optimisation of haemophilia organisation

  • Programme
    Optimisation of haemophilia organisation
Objectives
  • Establish 5 new regional haemophilia associations and offices
  • Identify, diagnose, register and educate haemophilia patients
  • Train haemophilia patient leaders
  • Promote cooperation between haemophilia associations and treatment centres
Impact
  • Community-wide beneficiaries: approximately 1,036 patients, 24 association leaders, 40 nurses and about 282 healthcare professionals trained
  • 142 new patients diagnosed
Country information
  • Population
    27.6 million
  • Expected patients
    2,760
  • Known patients
    1,723
  • GDP per capita (USD):
    12,600
  • Health expenditure as % of GDP:
    3.1

Marco Polo – establish quality of diagnosis of hereditary bleeding disorders on a national level

  • Programme
    Marco Polo – establish quality of diagnosis of hereditary bleeding disorders on a national level
  • Partner
    Venezuelan Haemophilia Association (AVH) and National Haemophilia Centre (CNH), Caracas
  • Represented by
    Dr Arlette Ruiz de Sáez and Cesar A. Garrido
  • Planned duration
    Three years, started 2010
Objectives
  • Optimise diagnostic laboratory units in seven regional centres
  • Improve knowledge of regional health care professionals in diagnostic techniques
  • Establish national laboratory network and strengthen regional treatment centres
  • Improve diagnosis rate
Country information
  • Population
    27.6 million
  • Expected patients
    2,760
  • Known patients
    1,723
  • GDP per capita (USD):
    12,600
  • Health expenditure as % of GDP:
    3.1

Desafio del Caribe

  • Partner
    Asociación Venezolana de la Hemofilia (AVH) and Federación de Hemofilia de la República Mexicana (FHRM)
  • Represented by
    Cesar A. Garrido and Carlos Gaitán
  • Planned duration
    18 months, started 2011
Objectives
  • Prepare 10 swimmers from each country for a swimming competition through a comprehensive training programme developed by swimming specialists in collaboration with a multidisciplinary medical team
  • Regularly evaluate swimmers by a haematologist, physiatrist, orthopaedist and psychologist resulting in a scientific publication
  • Transfer knowledge and exchange experiences between both countries
  • Create awareness about the importance of exercise through media
Country information
  • Population
    27.6 million
  • Expected patients
    2,760
  • Known patients
    1,723
  • GDP per capita (USD):
    12,600
  • Health expenditure as % of GDP:
    3.1

Our swimmers meet in Venezuela

Desafío del Caribe challenge continues

Related content

Improvement of haemophilia organisation and patient education - the full story from the first project in Brazil
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Establishment of haemophilia comprehensive care - the full story of the award winning Cuba project
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Latin American haemophilia network - the full story of the pilot project in Panama
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Optimisation of haemophilia organisation - the full story from Venezuela
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The full story of the Desafio Orinoco swimming competition
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