Organisations providing information and support
World Federation of Haemophilia
The World Federation of Haemophilia, an international not-for-profit organisation, was established in 1963. It is a global network of patient organisations in 118 countries and has official recognition from the World Health Organisation.
Haemophilia Society London
The Haemophilia Society is the only national, independent and patient-led organisation for people affected by bleeding disorders. They work in close partnership with the NHS to offer information, support and represent the interests of those affected.
Haemophilia Society support groups
This site gives people affected by bleeding disorders and inhibitors from across the UK the chance to share their experiences, and keep up to date on the latest news and research in inhibitors.
Delivery of factor replacement and recording bleeds and treatment
Haemtrack
Haemtrack is a system that is utilised by patients and haemophilia centres to record and monitor prophylaxis treatment and bleeding episodes, along with stock levels at home to trigger a delivery. Read a Haemtrack leaflet (PDF).
National Haemophilia Database
The UK Haemophilia Doctors Organisation (UKHCDO)
This page is dedicated to haemophilia patients and their families. It provides comprehensive and useful information on haemophilia, bleeding disorders and the National Haemophilia Database.
National Haemophilia Database (provided by UKHCDO)
The UKHCDO is required by the Department of Health to collect data on diagnosis, management and complications of bleeding disorders. This information is kept in the National Haemophilia Database in Manchester.
Travel information for patients with haemophilia
Haemophilia centre locator
This website will provide you with information about the haemophilia services and centres available worldwide.
Haemophilia - health and fitness
HemoAction
HemoAction is a series of games developed to help children learn about haemophilia in a fun, easy to understand, and interactive way. They can also be used by parents, nurses, and other healthcare providers to reinforce key concepts about the disease and its management.
Medical identification
Medical alert bracelets
MedicAlert is the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies.