Building Strength Through Care and Community
Contaminated Blood Inquiry
Friends and fellow sufferers
Haemophilia NI is an independent regional charity whose focus is to provide information, support and advocacy to everyone with Haemophilia, Von Willebrand's Disease and other bleeding disorders. We strongly believe in the importance of including families, carers and the bereaved.
Whilst we are independent of the The Haemophilia Society, we have co-operative relationships with them and the Welsh and Scottish societies which are established through a joint memorandum of understanding. The importance of a working collaborative voice is essential to ensure that you, our members, get the greatest advantage (as you will know through our collaborative advocacy in the contaminated Blood Inquiry). We will continue to work with that aim.
I’d like to welcome you to our website. It has been designed as a point of reference for you and as a means of focussing our attention on members of the local community with hereditary blood disorders. We are a small but significant community with a variety of needs.
As you will note from our charitable purposes, we function to support your wellbeing and serve you through advocacy, but this is only fully possible with your engagement. I do hope you will include us in your contact list and keep an eye on what is happening so that you can get involved and enjoy some of the events we run.
A message from our Chairman
Mary-Anne's March of Madness - 36K for Daniel 💙
March is Bleeding Disorders Awareness Month and I’m taking on a challenge to run 36 kilometres every week, more than double my usual, to raise awareness and vital funds for Haemophilia Northern Ireland (HNI).
March is Bleeding Disorders Awareness Month and I’m taking on a challenge to run 36 kilometres every week, more than double my usual, to raise awareness and vital funds for Haemophilia Northern Ireland (HNI).
This cause is deeply personal. My four-year-old son, Daniel, has severe haemophilia A, a rare bleeding disorder that prevents blood from clotting properly, meaning even minor injuries can lead to serious bleeding.
Living with haemophilia affects everyday life, bringing constant care and the worry that even a small knock could cause a serious bleed. Thanks to a weekly preventative injection, Hemlibra, Daniel’s clotting levels are around 15%, without it, they would be less than 1%.
Around 36,000 people in the UK live with an inherited bleeding disorder. Through every kilometre, I hope to raise awareness and help build a safer future for families like ours. Every step is for Daniel and everyone affected. 💙
HNI provides vital information and support and as a small charity, every donation truly makes a real difference. Thank you for supporting Daniel, HNI and the bleeding disorder community.
Global Impact
4 Key Facts About Haemophilia (Worldwide)
1 in 10,000
Haemophilia affects about 1 in every 10,000 people, and over 400,000 people live with it globally.
Over 75% untreated
More than 75% of people with haemophilia worldwide receive inadequate or no treatment at all.
30% spontaneous cases
Around 30% of cases occur with no family history, caused by a spontaneous genetic mutation.
Not Just Two Disorders
While Haemophilia and Von Willebrand’s are the most common bleeding disorders, rarer types such as Glanzmann’s disease and others also exist.