The Katharine Dormandy Haemophilia and Thrombosis Centre is a comprehensive care centre providing a range of services for patients with haemophilia, von Willebrand disease, other inherited coagulation factor deficiencies and inherited platelet disorders.  

The centre manages all aspects of diagnosis, treatment and care for adults and adolescents over the age of 12 with inherited or acquired bleeding disorders. The centre’s priority is the effective diagnosis and management of patients’ bleeding disorders. 

We have an on-site haemostasis laboratory with a team of biomedical scientists who assist with all aspects of diagnosis and treatment monitoring. 

Alongside the clinical team, the clinical trials team manages all aspects of haemophilia studies, including gene therapy. They collaborate with the University College London research team to improve care for people with inherited bleeding disorders. 

The service's holistic approach includes inpatient, outpatient, and community-based care. We run an outreach clinic at Luton and Dunstable University Hospital. The centre also works closely with Great Ormond Street Hospital Haemophilia Comprehensive Care Centre. 

Contact information

Tel: 020 7830 2068

Email: rf.haemophilia@nhs.net

Clinical advice line 

The specialist haemophilia nursing team operate a telephone advice line for any clinical queries about inherited bleeding disorders from patients, families or other healthcare personnel.  

Telephone advice line: 0207 830 2557. 

This service operates Monday to Friday, 9am to 5pm. 

Nurse-led clinical triage for walk-in patients 

Patients are encouraged to telephone before coming to the centre without an appointment. All patients are initially triaged by a clinical nurse specialist who will refer you to other members of the team if necessary.  

Bleeding disorder clinics 

The service runs clinics for patients with inherited and acquired bleeding disorders, including regular clinics for the long term follow up of adults and adolescents with bleeding disorders.  

Combined clinics have been set up to see patients with haemophilia, von Willebrand disease, and rare bleeding disorders. Working together with patients and families, we provide individualised, evidence-based treatment and management plans. 

Bleeding disorder counselling service 

A senior clinical psychologist runs the haemophilia counselling service, providing a holistic approach to caring for people with bleeding disorders and their families. It is the longest operating service of its kind in the UK.  

The service offers a range of psychological care, including psychological assessments for people with all  bleeding disorders.  

Assessments lead to either short-term counselling work (eg, one-to-one, couples, family or group) or, using an early warning system, onward referral to appropriate community services. The service also provides specialised genetic and reproductive counselling for inherited bleeding disorders through the genetic counselling clinic. 

The service has a genetic counselling clinic, held monthly, which provides genetic counselling, testing and diagnosis for adults and young people affected by inherited bleeding disorders and their families. 

The clinic is run by a haemophilia consultant with a special interest in genetics and a clinical psychologist.  

The service is designed for patients/families at risk of an inherited bleeding disorder. This includes discussion of complex needs, such as referral for pre-implantation genetic diagnosis for women thinking about pregnancy. Any woman who is seen in this clinic who is already pregnant is also referred to the joint haemophilia obstetric clinic.  

Patients are usually referred by their GP or their haemophilia consultant or obstetric team. 

Physiotherapists are responsible for all aspects of musculoskeletal care for people with inherited and acquired bleeding disorders. They see patients in routine outpatient clinics, give advice over the telephone, and see emergency walk-in patients.  

Physiotherapists in the joint orthopaedic clinic provide regular assessments of joint and muscle function for patients with bleeding disorders to identify whether there is a need for surgery or other conservative treatments.  

Orthopaedic surgeons, physiotherapists and haematologists work together to see patients with haemophilia arthropathy.  

Services such as radioactive synovectomies, arthrodesis and joint replacements are also provided. 

The joint haemophilia, obstetrics and gynaecology clinic is held every week and aims to provide comprehensive care to improve the quality of life of women with bleeding disorders.  

All women with a bleeding disorder can be referred by a nurse or consultant for the management of heavy menstrual bleeding or other gynaecological conditions in accordance with guidelines. 

There are specific pathways for referrals which are triaged by the lead nurse for haemophilia, which includes urgent access to the fetal medicine unit for dating scans and advice relating to invasive and non-invasive prenatal diagnosis. 

Carriers of haemophilia, other women with inherited bleeding disorders or those at risk of delivering a baby with a bleeding disorder, can self-refer to the hospital for antenatal care via our website. 

HIV services 

All patients with a bleeding disorder and HIV infection are co-managed with the infectious disease consultants and Ian Charleston Day Centre. 

Where an individual requires hospital admission, they are jointly cared for by both teams. 

Liver (hepatology) service 

All patients with bleeding disorders and active hepatitis C infection or cirrhosis, despite eradication therapy, remain under the care of the specialist viral hepatology team.  

Outpatients are seen in The Institute on the first floor of the Royal Free Hospital. 

Where an individual requires hospital admission, they are jointly cared for by both teams 

Dental and oral surgery services 

People with bleeding disorders can access most of their routine dental care from community dentists.  

For those with complex oral surgery needs, such as root canal work or dental extractions, patients can be referred by a consultant to other specialist hospitals.  

You may find the following resources useful when looking for more information on haemophilia.

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