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)
Delivering a Baby with Haemophilia (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:02 May 2024