The Journal of Haemophilia Practice

System Change

Accès libre | 23 févr. 2023

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency

Amanda Bok

Amanda Bok

European Haemophilia ConsortiumBrussels, Belgium

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Bok, Amanda

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Declan Noone

Declan Noone

European Haemophilia ConsortiumBrussels, Belgium

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Noone, Declan

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Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium

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Skouw-Rasmussen, Naja

  

Accès libre | 17 juil. 2023

Access equity: key questions and challenges - A report from the 1st workshop of the European Haemophilia Consortium (EHC) Think Tank Workstream on Access Equity

Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium

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Skouw-Rasmussen, Naja

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Laura Savini

Laura Savini

European Haemophilia ConsortiumBrussels, Belgium

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Savini, Laura

  

Accès libre | 09 août 2023

Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways

Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium

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Skouw-Rasmussen, Naja

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Laura Savini

Laura Savini

European Haemophilia ConsortiumBrussels, Belgium

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Savini, Laura

  

Accès libre | 29 déc. 2023

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways

Zita Gacser

Zita Gacser

European Haemophilia ConsortiumBrussels, Belgium

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Gacser, Zita

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Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium

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Skouw-Rasmussen, Naja

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Steven Bourke

Steven Bourke

PersonalPulse GmbHBasel, Switzerland

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Bourke, Steven

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Renske ten Ham

Renske ten Ham

UMC UtrechtUtrecht, The Netherlands

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ten Ham, Renske

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Dalma Hosszú

Dalma Hosszú

• Syreon Research InstituteBudapest, Hungary
• European Haemophilia ConsortiumBrussels, Belgium

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Hosszú, Dalma

  

Clinical Research

Accès libre | 23 févr. 2023

Clinical and radiological assessment of joints in people with haemophilia in Assam, Northeast India: a cross-sectional study

Bhabani Sankar Dhal

Bhabani Sankar Dhal

Dept of Medicine, Assam Medical CollegeDibrugarh, India

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Dhal, Bhabani Sankar

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Anupam Dutta

Anupam Dutta

Dept of Medicine, Assam Medical CollegeDibrugarh, India

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Dutta, Anupam

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Arijit Das

Arijit Das

Dept of Medicine, Assam Medical CollegeDibrugarh, India

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Das, Arijit

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Dhrubajyoti Borpatragohain

Dhrubajyoti Borpatragohain

Dept of Radiodiagnosis, Assam Medical CollegeDibrugarh, India

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Borpatragohain, Dhrubajyoti

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Adity Sharma

Adity Sharma

Dept of Pathology, Assam Medical CollegeDibrugarh, India

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Sharma, Adity

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Arnav Kashyap

Arnav Kashyap

Dept of Radiodiagnosis, Assam Medical CollegeDibrugarh, India

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Kashyap, Arnav

  

Accès libre | 17 juil. 2023

Pain assessment and management in the Moroccan haemophilia population: a prospective descriptive study

Sofia Sraidi

Sofia Sraidi

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Sraidi, Sofia

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Sara Naim

Sara Naim

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Naim, Sara

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Mouna Lamchahab

Mouna Lamchahab

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Lamchahab, Mouna

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Siham Cherkaoui

Siham Cherkaoui

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Cherkaoui, Siham

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Meryem Qachouh

Meryem Qachouh

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Qachouh, Meryem

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Mohamed Rachid

Mohamed Rachid

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Rachid, Mohamed

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Abdellah Madani

Abdellah Madani

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Madani, Abdellah

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Nissrine Khoubila

Nissrine Khoubila

Hematology and Pediatric Oncology, University Hospital Ibn RochdCasablanca, Morocco

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Khoubila, Nissrine

  

Accès libre | 31 oct. 2023

Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study

Fatemeh Feizi

Fatemeh Feizi

Department of Psychology, Faculty of Psychology and Education, University of TehranTehran, Iran

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Feizi, Fatemeh

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Ali Eshghi

Ali Eshghi

Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran

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Eshghi, Ali

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Manijeh Firoozi

Manijeh Firoozi

Department of Psychology, Faculty of Psychology and Education, University of TehranTehran, Iran

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Firoozi, Manijeh

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Zeinab Shormeij

Zeinab Shormeij

Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran

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Shormeij, Zeinab

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Behnaz Habib Panah

Behnaz Habib Panah

Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran

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Panah, Behnaz Habib

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Peyman Eshghi

Peyman Eshghi

Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children’s Health, Shahid Beheshti University of Medical SciencesTehran, Iran

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Eshghi, Peyman

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Javad Alaghband Rad

Javad Alaghband Rad

Department of Psychiatry, Tehran University of Medical SciencesTehran, Iran

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Rad, Javad Alaghband

  

Accès libre | 17 déc. 2023

Factors associated with delays in seeking treatment for acute bleeding among persons living with haemophilia in Uganda: a cross-sectional mixed methods study

Agnes Kisakye

Agnes Kisakye

• Makerere UniversityKampala, Uganda
• Haemophilia Foundation of UgandaUganda

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Kisakye, Agnes

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Phillip Gitah Kasirye

Phillip Gitah Kasirye

• Mulago National Referral HospialKampala, Uganda
• Haemophilia Foundation of UgandaUganda

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Kasirye, Phillip Gitah

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Dan Muramuzi

Dan Muramuzi

Makerere UniversityKampala, Uganda

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Muramuzi, Dan

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Daniel Opuch

Daniel Opuch

Baylor College of Medicine Children’s Foundation UgandaKampala, Uganda

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Opuch, Daniel

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Joan Nampiima

Joan Nampiima

Makerere UniversityKampala, Uganda

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Nampiima, Joan

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Grace Ndeezi

Grace Ndeezi

• Makerere University College of Health SciencesKampala, Uganda
• Haemophilia Foundation of UgandaUganda

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Ndeezi, Grace

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Adoke Yeka

Adoke Yeka

Makerere University College of Health SciencesKampala, Uganda

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Yeka, Adoke

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Horatiu Vultur

Horatiu Vultur

Carol Davila University of Medicine and PharmacyBucarest, Romania

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Vultur, Horatiu

  

Community Focus

Accès libre | 21 avr. 2023

The impact of the Contaminated Blood Scandal on the next generation: the state of the evidence

Sally-Anne Wherry

Sally-Anne Wherry

School of Health and Social Care, University of GloucestershireGloucester, UK

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Wherry, Sally-Anne

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Liz Berragan

Liz Berragan

School of Health and Social Care, University of GloucestershireGloucester, UK

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Berragan, Liz

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Ros Jennings

Ros Jennings

School of Health and Social Care, University of GloucestershireGloucester, UK

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Jennings, Ros

  

Accès libre | 18 mai 2023

The strategies of parents who tell their daughters about the possibility of being a haemophilia carrier

Keiko Nozaki

Keiko Nozaki

Department of Clinical Education, Ashiya UniversityHyogo, Japan

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Nozaki, Keiko

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Akemi Yamazaki

Akemi Yamazaki

Division of Health Sciences, Graduate School of Medicine at Osaka UniversityOsaka, Japan

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Yamazaki, Akemi

  

Nurse Focus

Accès libre | 05 mai 2023

Editorial – Living, Caring, Learning: How patients shape the specialist haemophilia nurse

Kate Khair

Kate Khair

Director of Research, Haemnet LtdLondon, UK

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Khair, Kate

  

Accès libre | 17 déc. 2023

Living, Caring, Learning – Addressing challenges in the transition to adult care

Greta Mulders

Greta Mulders

haemophilia nurse specialist at Erasmus University Medical CentreRotterdam, The Netherlands

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Mulders, Greta

  

Accès libre | 17 déc. 2023

Living, Caring, Learning – Trust and teamwork in patient care

Marcela Ganzella Sisdelli

Marcela Ganzella Sisdelli

Nurse Team Leader at the Blood Center Foundation of Ribeirão PretoSão Paulo, Brazil

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Sisdelli, Marcela Ganzella

  

Clinical Practice

Accès libre | 09 août 2023

Shared decision-making for gene therapy in haemophilia care

Simon Fletcher

Simon Fletcher

Haemnet LtdLondon, UK

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Fletcher, Simon

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Kathryn Jenner

Kathryn Jenner

Haemnet LtdLondon, UK

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Jenner, Kathryn

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Kate Khair

Kate Khair

Haemnet LtdLondon, UK

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Khair, Kate

  

Accès libre | 20 déc. 2023

Recognising the importance of the research nurse and study coordinators in enhancing retention of people with haemophilia in clinical trials

Kate Khair

Kate Khair

Haemnet LtdLondon, UK

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Khair, Kate

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Hanne Thykjaer

Hanne Thykjaer

Novo Nordisk A/SBagsvaerd, Hovedstaden, Denmark

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Thykjaer, Hanne

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Tami Barazani-Brutman

Tami Barazani-Brutman

Sheba Medical Center, Tel HashomerTel Aviv, Israel

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Barazani-Brutman, Tami

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Kelly Bellm

Kelly Bellm

Vanderbilt University Medical CenterNashville, US

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Bellm, Kelly

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Christopher Benjamin

Christopher Benjamin

Christian Medical College VelloreVellore, India

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Benjamin, Christopher

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Cindy Wakefield

Cindy Wakefield

The Hospital for Sick ChildrenToronto, Ontario, Canada

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Wakefield, Cindy

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Nicola Williams

Nicola Williams

Royal Children’s HospitalMelbourne, Australia

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Williams, Nicola

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Pakawan Wongwerawattanakoon

Pakawan Wongwerawattanakoon

Mahidol UniversityBangkok, Thailand

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Wongwerawattanakoon, Pakawan

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Huiqun Zhong

Huiqun Zhong

Nanfang Hospital of Guangzhou Southern Medical UniversityGuangzhou City, China

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Zhong, Huiqun

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Greta Mulders

Greta Mulders

Erasmus University Medical CenterRotterdam, Netherlands

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Mulders, Greta

  

Accès libre | 29 déc. 2023

A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts

Gary Benson

Gary Benson

Northern Ireland Haemophilia Comprehensive Care Centre, Belfast City HospitalBelfast, Northern Ireland

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Benson, Gary

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Trupti Bhandari

Trupti Bhandari

Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation TrustLondon, UK

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Bhandari, Trupti

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Keith Gomez

Keith Gomez

Royal Free London NHS Foundation TrustLondon, UK

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Gomez, Keith

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Kerry-Ann Holder

Kerry-Ann Holder

Noah’s Ark Children’s Hospital for WalesCardiff, UK

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Holder, Kerry-Ann

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David Stephensen

David Stephensen

Kent Haemophilia and Thrombosis Centre, East Kent Hospitals University NHS Foundation TrustKent, UK

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Stephensen, David

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Alice Wilkinson

Alice Wilkinson

Oxford Paediatric Haemophilia and Thrombosis CentreOxford, UK

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Wilkinson, Alice

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Sarah Mangles

Sarah Mangles

Haemophilia, Haemostasis and Thrombosis Centre, Basingstoke and North Hampshire HospitalBasingstoke, UK

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Mangles, Sarah

  

Case Study

Accès libre | 09 août 2023

Management of a patient with factor X deficiency with FEIBA: a case report

Luish Borboruah

Luish Borboruah

Assam Medical College and HospitalDibrugarh, India

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Borboruah, Luish

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Anupam Dutta

Anupam Dutta

Assam Medical College and HospitalDibrugarh, India

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Dutta, Anupam

  

Accès libre | 19 oct. 2023

A creative approach to managing a case of haemophilia A with inhibitors in a low-resource country: case report

Simran Bhatia

Simran Bhatia

Kasturba Medical College, Manipal Academy of Higher EducationManipal, India

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Bhatia, Simran

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M V Archana

M V Archana

Division of Pediatric Hematology and Oncology, Kasturba Medical College, Manipal Academy of Higher EducationManipal, India

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Archana, M V

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Vasudeva Bhat

Vasudeva Bhat

Division of Pediatric Hematology and Oncology, Kasturba Medical College, Manipal Academy of Higher EducationManipal, India

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Bhat, Vasudeva

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Ganesh M Balthillya

Ganesh M Balthillya

Department of Physiotherapy, Manipal College of Health Professions, Manipal Academy of Higher EducationManipal, India

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Balthillya, Ganesh M

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Sulochana Badagabettu

Sulochana Badagabettu

Department of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher EducationManipal, India

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Badagabettu, Sulochana

  

Accès libre | 19 oct. 2023

The first reported case of factor X deficiency in a Filipino child – case study

Kristian Dorell Masacupan

Kristian Dorell Masacupan

St Luke’s Medical CenterQuezon City, Philippines

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Masacupan, Kristian Dorell

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Allan Robert Racho

Allan Robert Racho

St Luke’s Medical CenterQuezon City, Philippines

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Racho, Allan Robert

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Maria Luz Del Rosario

Maria Luz Del Rosario

St Luke’s Medical CenterQuezon City, Philippines

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Del Rosario, Maria Luz

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Loralyn Mae Lagara-Aranas

Loralyn Mae Lagara-Aranas

St Luke’s Medical CenterQuezon City, Philippines

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Lagara-Aranas, Loralyn Mae

  

Commentary

Accès libre | 17 déc. 2023

Factor X deficiency: a comment on two recent case studies

Brian Branchford

Brian Branchford

Versiti Medical Sciences InstituteMilwaukee, Wisconsin, United States

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Branchford, Brian