Skip to main content
Clinical Haematology

This site is best viewed with a modern browser. You appear to be using an old version of Internet Explorer.

Conditions we treat

We care for registered patients with inherited and acquired bleeding disorders, and their families.

When you have, or your family member has, been given a diagnosis of a bleeding disorder, we will give you written information about this, and links to resources about the condition and available treatments.

Below are some resources you might find useful which we have curated for you.

Links are checked and updated every 12 months - some external sources might offer information not be completely relevant to patients in the UK or at Oxford Haemophilia and Thrombosis Centre.

Please contact your Haemophilia team if you have any questions or queries - contact us.

Patient information welcome pack

Wecome to the Adult Haemophilia Comprehensive Care Centre (pdf)

National Haemophilia Database: Your Questions Answered (pdf) - UKHCDO

Become a Member - Haemophilia Society

Hemophilia Dictionary (pdf) - Novomedlink

Haemophilia A/B

Haemophilia - Haemophilia Society

Understanding Haemophilia (pdf) - Haemophilia Society

Congenital Haemophilia (pdf) - Novonordisk

What is haemophilia A? (pdf) - Roche

Haemophilia (pdf) - Haemophilia Foundation Australia

Newly Diagnosed - Haemophilia Foundation Australia

Hemophilia A and B - Canadian Hemophilia Society

Haemophilia A

Haemophilia A (pdf) - GOSH

Defining the severity of haemophilia A (pdf) - Roche

Hemophilia A (pdf) - National Bleeding Disorders Foundation

Haemophilia B

Haemophilia B (pdf) - GOSH

Living with Haemophilia B (pdf) - Liberate Life

Transition with haemophilia

18 - Taking Control (pdf) - Haemophila Foundation

Mild / moderate haemophilia 

Mild or moderate haemophilia: how will it affect my life? (pdf) - Imperial College Healthcare

East Kent Hospitals NHS Foundation Trust - search 'mild / moderate haemophilia'

Living with mild haemophilia: a guide (pdf) - Haemophilia Foundation Australia

Mild haemophilia fact sheet (pdf) - Haemophilia Foundation Australia

All about mild hemophilia (pdf) - Canadian Hemophilia Society

Treatments

DDAVP (desmopressin) response test (pdf) - OUH

Inhibitors and their treatment

Inhibitors - Haemophilia Society

Inhibitors - European Haemophilia Consortium

Bypassing products

Inhibitors in hemophilia: a primer (pdf) - World Federation of Hemophilia

Effective treatment for hemophilia A with inhibitors - Novoseven

Understanding hemophilia with inhibitors - Novoseven

Emicizumab (for people with an inhibitor) - Haemophilia Society

Prophylaxis / self-infusion 

Treating and Managing a Bleed - Haemophilia Society

Treatment Types - Haemophilia Society

Haemophilia treatment - Haemophilia Foundation Australia

Self-infusion

Mastering Self-Infusion - Haemnet

Specific treatments

Emicizumab HEMLIBRA®

Emicizumab (for people without an inhibitor) - Haemophilia Society

Injecting HEMLIBRA® - Emicizumab-kxwh

HEMLIBRA® | Hemophilia A Treatment - Emicizumab-kxwh

Emicizumab (for people with an inhibitor) - Haemophilia Society

Von Willebrand Disease

Von Willebrand disease is also known as von Willebrand disorder.

A guide for men with Von Willebrand disease (pdf) - Voncento

A guide for women with Von Willebrand disease (pdf) - Voncento

Considerations for women with Von Willebrand disease - Bleedingdisorders.com

Von Willebrand Disorder - Haemophilia Society

Understanding VWD (pdf) - Haemophilia Society

A guide for people living with von Willebrand disorder (pdf) - Haemophilia Foundation Australia

Von Willebrand disease - Haemophilia Foundation Australia

Von Willebrand disease information resources - Haemophilia Foundation Australia

Von Willebrand Disorder (VWD) | Special Issues for Women and Girls - Haemophilia Foundation Australia

Von-Willebrand disease (pdf) - Haemophilia Foundation Australia

Treatments

Voncento

Your guide to Voncento (pdf) - Voncento

Package leaflet (pdf) - Voncento

Veyvondi / Vonvendi

Summary of product characteristics (pdf) - Veyvondi

My Deciding Factor (pdf) - Vonvendi

What is VONVENDI®? - Vonvendi

DDAVP (desmopressin) response test (pdf)

Rare disorders

Rare bleeding disorders (pdf) - Haemophilia Society

Rare clotting factor deficiencies - World Federation of Hemophilia

Factor V

Factor V deficiency (pdf) - GOSH

Factor V Deficiency - Haemophilia Foundation Australia

Factor V deficiency - Canadian Hemophilia Society

Factor V Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Treatment

Package leaflet (pdf) - OctaplasLG

Factor VII

Factor VII deficiency (pdf) - Haemophilia Society

Factor VII deficiency - GOSH

Factor VII deficiency - Haemophilia Foundation Australia

Factor VII deficiency - Canadian Hemophilia Society

Factor VII Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Treatment

Novoseven

Factor VII deficiency (pdf) - Novomedlink

Factor X

Factor X deficiency (pdf) - Haemophilia Foundation

Factor X deficiency (pdf) - GOSH

Factor X deficiency - Haemophilia Foundation Australia

Factor X deficiency - Canadian Hemophilia Society

Factor X Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Treatment

Package leaflet (pdf) - OctaplasLG

Package leaflet (pdf) - Octaplex

Patient brochure (pdf) - Coagadex

Factor XI

Factor XI deficiency (pdf) - Haemophilia Society

Factor XI deficiency (pdf) - GOSH

Factor XI deficiency - Haemophilia Foundation Australia

Factor XI deficiency (Hemophilia C) - Canadian Hemophilia Society

Factor XI Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Treatment

Package leaflet (pdf) - OctaplasLG

Factor XIII

Factor XIII deficiency (pdf) - Haemophilia Society

Factor XIII deficiency (pdf) - GOSH

Factor XIII deficiency - Haemophilia Foundation Australia

Factor XIII deficiency - Canadian Hemophilia Society

Factor XIII Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Factor XIII (pdf) - National Hemophilia Foundation

Treatment

Package leaflet (pdf) - Fibrogammin

Package leaflet (pdf) - NovoThirteen

Factor I

Factor I deficiency (pdf) - GOSH

Factor I deficiency - Haemophilia Foundation Australia

Factor I deficiency (Fibrinogen deficiency) - Canadian Hemophilia Society

Factor I Deficiency | Symptoms, Genetics, Treatment -National Bleeding Disorders Foundation

Factor I (Fibrinogen) Deficiency - Irish Haemophilia Society

Fibrinogen Deficiency - CSL

Treatment

RiaSTAP

About Congenital Fibrinogen Deficiency (CFD) - RiaSTAP

Package leaflet (pdf) - RiaSTAP

Package leaflet (pdf) - Fibryga

Factor II

Factor II deficiency (pdf) - GOSH

Factor II Deficiency | Symptoms, Genetics, Treatment - National Bleeding Disorders Foundation

Factor II deficiency - Haemophilia Foundation Australia

Factor II deficiency (Prothrombin deficiency) - Canadian Hemophilia Society

Treatment

Package leaflet (pdf) - Octaplex

Platelet disorders

What are Inherited Platelet Function Disorders? (pdf) - World Federation of Hemophilia

Platelet disorders - GOSH

Inherited Platelet Disorders | Types, Symptoms, and Support - National Bleeding Disorders Foundation

What Are Platelet Disorders? - USA National Heart Lung and Blood Institute

Disorders of Platelet Function (pdf) - Canadian Hemophilia Society

Platelet Storage Pool Deficiency (pdf) - National Hemophilia Foundation

Treatment

DDAVP

Desmopressin (DDAVP) for people with inherited bleeding disorders- Imperial College Healthcare

DDAVP (desmopressin) response test (pdf)

Bernard Soulier Syndrome

Bernard Soulier Syndrome (pdf) - Haemophilia Society

Bernard-Soulier Syndrome (pdf) - Canadian Hemophilia Society

Bernard-Soulier syndrome (pdf) - Platelet Society

Glanzmann's Thrombasthenia

Glanzmann's Thrombasthenia (pdf) - Haemophilia Society

Glanzmann thrombasthaenia (pdf) - Platelet Society

Glanzmann's Thrombasthenia (pdf) - National Hemophilia Foundation

Treatment

Novoseven

Glanzmann's Thrombasthenia (GT) with Refractoriness to Platelets (pdf) - Novoseven

Other specific platelet disorders

ADP-P2Y12

ADP P2Y12 factsheet (pdf) - Platelet Society

Paris-Trousseau

FLI1 and Paris-Trousseau syndrome (pdf) - Platelet Society

GFI1B-related thrombocytopenia

GFI1B-related thrombocytopenia (pdf) - Platelet Society

Grey platelet syndrome

Grey platelet syndrome (pdf) - Platelet Society

Hermansky Pudlak syndrome

Hermansky Pudlak syndrome - Platelet Society

MYH9

MYH9-related disorder (pdf) - Platelet Society

RUNX1

RUNX1 (familial platelet disorder (pdf) - Platelet Society

SLFN14-related thrombocytopenia

SLFN14-related thrombocytopenia (pdf) - Platelet Society

Wiskott Aldrich syndrome

Wiskott Aldrich syndrome (pdf) - Platelet Society

Physical activity

Exercise, physical activity and healthy eating - Changing Haemophilia

HaemActive app - Changing Haemophilia

Exercising with haemophilia - Liberate life

Haemophilia and Working Out | Project GYM YouTube

Girls and women

Sports-and-exercise for girls and young women with bleeding disorders (pdf) - Haemophilia Foundation Australia

Ankle, knee and elbow

Ankle exercises for people with hemophilia (pdf) - NovoEight

Exercises for People with Hemophilia (pdf) - World Federation of Hemophilia

Balance

Haemophilia physiotherapy exercise series - balance series - OUH YouTube

Core

Haemophilia physiotherapy exercise series - Pilates exercise series - OUH YouTube

Bleeds

Treating and Managing a Bleed - Haemophilia Society

Women and girls with bleeding disorders

Women and bleeding disorders - Canadian Hemophilia Society

Women living with bleeding disorders - Haemophilia Society

Girls living with bleeding disorders - Haemophilia Society

A snapshot of bleeding disorders in females (pdf) - Haemophilia Foundation Australia

Female factors (pdf) - Haemophilia Foundation Australia

Information for carriers

Oxford University Hospitals

Information About Pregnancy for Haemophilia Carriers (pdf)

Carriers of Haemophilia (pdf)

Babies with an Inherited Bleeding Disorder (pdf)

Canadian Hemophilia Society

Symptomatic carriers of hemophilia (pdf) - Canadian Hemophilia Society

Australian Haemophilia Foundation

Haemophilia testing in women and girls (pdf) - Australian Haemophilia Foundation

Finding out you carry the gene (pdf) - Australian Haemophilia Foundation

Telling others about bleeding disorders (pdf) - Australian Haemophilia Foundation

Periods in women with bleeding disorders

Know Your Flow

Try the #TalkingRed Symptom Checker - Haemophilia Society

Tranexamic acid for children/adolescents

Tranexamic acid for heavy bleeding during periods (pdf) - RCPCH

Frequently asked questions about periods (pdf) - Australian Haemophilia Foundation

Sports and exercise for girls and young women with bleeding disorders (pdf) - Australian Haemophilia Foundation

Iron deficiency

Iron Deficiency and Me (pdf) - Canadian Hemophilia Society

Acquired bleeding disorders

Acquired haemophilia fact sheet - Haemophilia Foundation Australia

Acquired Hemophilia | Paul Giangrande, OHTC (pdf)

Treatment

Obizur [Antihemophilic Factor (Recombinant), Porcine Sequence] | Acquired Hemophilia A

Obizur, INN Susoctocog alfa - Medicines.org.uk

Bypassing agents

What are hemophilia inhibitors? - FEIBA [Anti-Inhibitor Coagulant Complex]

Treatment for Acquired Hemophilia | NovoSeven® RT (Coagulation Factor VIIa, recombinant) - Novomedlink

Gene therapy

Gene therapy in haemophilia - Haemophilia Foundation Australia

Gene therapy links (pdf) - Canadian Hemophilia Society

Gene Therapy Education Program - Canadian Hemophilia Society

All about hemophilia gene therapy (pdf) - Canadian Hemophilia Society

UK licensed patient information

Package leaflet - Hemgenix (pdf)

School information

Bleeding Disorders and School - Haemophilia Society

Treatments

Tranexamic acid (pdf)

Tranexamic Acid (pdf) - Torbay and South Devon

Tranexamic acid for bleeding (Cyklokapron): side effects - Patient info

Last reviewed:21 May 2024