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List of all projects in Europe

Bulgaria

Creation of comprehensive haemophilia treatment centre

  • Programme
    Creation of comprehensive haemophilia treatment centre
  • Partner
    National Center of Haematology and Transfusiology (NCHT); Haematology Hospital “Joan Pavel”, Sofia
  • Represented by
    Prof Toshko Jelev Lissitchkov
Objectives
  • Form Comprehensive Haemophilia Treatment Centre in Sofia
  • Train and educate for a multidisciplinary approach
  • Update current haemophilia guidelines for prevention and treatment of bleeding
  • Create awareness programme in western Bulgaria
  • Regularly examine and perform laboratory tests
  • Support and update national haemophilia registry
Impact
  • Raised standards of haemophilia care in western Bulgaria
  • About twelve haematologists and seven nurses trained
  • 100–150 specialists and 600 patients received education material
  • 150–200 patients examined, screened and received regular rehabilitation
  • 150–200 patients in regular rehabilitation
  • More than 100 patients and families received genetic consultation
Country information
  • Population
    7.1 million
  • Expected patients
    710
  • Known patients
    807
  • GDP per capita (USD):
    12,800
  • Health expenditure as % of GDP:
    7,4

Extension of comprehensive care to national level

  • Programme
    Extension of comprehensive care to national level
  • Partner
    Specialized Haematological Hospital “Joan Pavel”, Sofia
  • Represented by
    Prof Toshko Jelev Lissitchkov
  • Planned duration
    Two years, completed 2011
Achievements - Training and education
  • 40 health care professionals from four medical university hospitals trained to support set-up of multidisciplinary care in Plovdiv, Pleven, Stara Zagora, Varna
  • 261 patients received medical consultations by specialists in Sofia and follow-up consultations in their regions
Achievements - Diagnosis & registries
  • Computers installed in the four medical university hospitals to update the patient registry
  • Screening and testing methods standardised and certified in three medical university hospitals
  • More than 250 patients were given access to multidisciplinary consultation
Country information
  • Population
    7.1 million
  • Expected patients
    710
  • Known patients
    807
  • GDP per capita (USD):
    12,800
  • Health expenditure as % of GDP:
    7,4

Lithuania

Collaboration of LHS patients and specialists to improve physiotherapy care

  • Programme
    Collaboration of LHS patients and specialists to improve physiotherapy care
  • Partner
    Lithuania Hemophilia Society (LHS), Kauno Raj
  • Represented by
    Mr Egidijus Šliaužys
  • Planned duration
    15 months, started 2011
Objectives
  • Train two physiotherapists and one psychologist abroad
  • Deliver comprehensive educational programme including workshops and development of materials for physiotherapists and patients with their families
  • Create awareness regarding the benefit of physiotherapy as well as psychological support
Country information
  • Population
    3.5 million
  • Expected patients
    350
  • Known patients
    146
  • GDP per capita (USD):
    15.900
  • Health expenditure as % of GDP:
    6,6

Macedonia

Capacity building in haemophilia care

  • Programme
    Capacity building in haemophilia care
  • Partner
    University Children's Hospital, Medical Faculty, Univ. "Ss Cyril and Methodius", Skopje
  • Represented by
    Prof Sofijanka Glamocanin
  • Planned duration
    One year, completed 2009
Achievements - Training and education
  • 500 haematologists, paediatricians and orthopaedists trained
  • 114 nurses, 21 lab technicians educated
  • 115 patients, 92 family members and other community stakeholders educated
  • 2,000 copies of educational material for healthcare professionals developed and produced
  • 1,650 copies of educational material for patients and families developed and produced
  • ‘Guidelines for the Management of Haemophilia’ translated and accepted as national guidelines
Achievements - Diagnosis
  • Screening programme executed with three teams visiting centres in east, central and western Macedonia
  • 185 patients (re-)tested
  • Survey conducted to assess haemophilia patients' health and clinical status
Country information
  • Population
    2.1 million
  • Expected patients
    210
  • Known patients
    185
  • GDP per capita (USD):
    9,400
  • Health expenditure as % of GDP:
    6.9

Establish national multidisciplinary care centre for haemophilia

  • Programme
    Establish national multidisciplinary care centre for haemophilia
  • Partner
    National Institute of Transfusion Medicine, Skopje
  • Represented by
    Dr Violeta Dejanova-Ilijevska
  • Planned duration
    One year, started 2011
Objectives
  • Improve infrastructure for haemophilia treatment centre
  • Train health care professionals and create a multidisciplinary team
  • Educate patients about benefits of multidisciplinary care and raise awareness about this approach
  • Involve patient association in awareness creation activities – i.e. newsletter, website
Country information
  • Population
    2.1 million
  • Expected patients
    210
  • Known patients
    185
  • GDP per capita (USD):
    9,400
  • Health expenditure as % of GDP:
    6,9

Poland

Standardisation of haemophilia diagnosis and treatment

  • Programme
    Standardisation of haemophilia diagnosis and treatment
  • Partner
    Haematology Department, Paediatric Clinic, Warsaw
  • Represented by
    Dr Anna Klukowska
  • Planned duration
    Two years, completed 2007
Objectives
  • Establish multi-centre collaboration between haemophilia doctors, nurses and laboratory technicians
  • Train healthcare professionals and update treatment guidelines
  • Educate patients and their families
  • Screen about 850 severe haemophilia patients
  • Update the national haemophilia registry
Impact
  • About 850 severe haemophilia patients screened and diagnosis confirmed
  • Approximately 170 doctors, 50 nurses and 850 patients trained
  • Treatment guidelines updated (70 healthcare professionals involved)
  • National haemophilia registry implemented
Country information
  • Population
    38.5 million
  • Expected patients
    3,850
  • Known patients
    2,269
  • GDP per capita (USD):
    16,200
  • Health expenditure as % of GDP:
    7.1

Serbia

Spread knowledge on haemophilia and improve regional care

  • Programme
    Spread knowledge on haemophilia and improve regional care
  • Partner
    Serbian Haemophilia Care Doctors Group (SHCDG), Belgrade
  • Represented by
    Dr Dragana Janic
  • Planned duration
    2 years, started 2011
Objectives
  • Develop and implement National Treatment Guidelines for Haemophilia
  • Establish dedicated haemophilia cabinets in four university clinical centres in Belgrade, Novi Sad, Niš, Kragujerac
  • Establish “Haemophilia School”– training programme for HCPs in regions and patients with their families
  • Run broad awareness creation programme targeting general public
Country information
  • Population
    7.3 million
  • Expected patients
    730
  • Known patients
    677
  • GDP per capita (USD):
    11,000
  • Health expenditure as % of GDP:
    4.8

Romania

Improvement of haemophilia care through outreach

  • Programme
    Improvement of haemophilia care through outreach
  • Partner
    Emergency Clinical Hospital "Louis Turcanu" Haemophilia Centre, Timisoara
  • Represented by
    Prof Dr Margit Serban
  • Planned duration
    Two years, completed 2010
Achievements - Infrastructure
  • Five new functional haemophilia centres in main regions
Achievements - Training & education
  • Workshops for healthcare professionals, patients and families
  • Written educational materials for doctors, nurses and patients developed and distributed
  • Numerous meetings with the patient organisation and authorities
  • Creation of a National Alliance for Rare Diseases
Achievements - Diagnosis & registries
  • Updating of national haemophilia registry and creation of a database on health and socioeconomic data
  • Improved diagnosis through testing of 1,081 samples collected
Country information
  • Population
    21.3 million
  • Expected patients
    2,130
  • Known patients
    1,210
  • GDP per capita (USD):
    11,700
  • Health expenditure as % of GDP:
    5.4

Ukraine

National education and awareness creation programme in haemophilia

  • Programme
    National education and awareness creation programme in haemophilia
  • Partner
    Kyiv City Association of haemophilia “Factor”, Kiev
  • Represented by
    Mr Aleksandr Shmilo
  • Responsible person
    Assoc Prof Dr Galyna Moroz – P.L. Shupyk National Medical academy of post-graduate education
  • Planned duration
    One year, approved 2010, started 2011
Objectives
  • Run national educational programme for health care professionals including development of educational material and guidelines of haemophilia management
  • Establish Haemophilia Active Groups in all regions to run “Haemophilia School” for patients and families
  • Improve laboratory in Kiev Regional Hospital and run diagnosis programme as a pilot
Country information
  • Population
    45.1 million
  • Expected patients
    4,510
  • Known patients
    2,367
  • GDP per capita (USD):
    6,400
  • Health expenditure as % of GDP:
    7

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Creation of comprehensive haemophilia treatment centre - the full story from Bulgaria
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Extension of comprehensive care to national level - the full story from the second Bulgaria project
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Capacity building in haemophilia care - the full story of the 2010 award winning project in Macedonia
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Standardisation of haemophilia diagnosis and treatment - the full story from Poland
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Improvement of haemophilia care through outreach - the full story from Romania
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