Our Mission & Story
Chair –
Nigel Hamilton
Nigel is the Chair of Haemophilia NI and specialised campaign leader in the UK Societies in the Infected Blood Inquiry 2017-2024. He is retired from the Specialist Engineering recruitment industry and Director in several companies. Nigel was born with moderate Haemophilia A, an identical twin, and was confirmed co-infected with HCV and HSBC in 1989.
Nigel is a former Trustee of the UK Haemophilia Society 2001-2002 and was active in the Archer Report and VCJD campaigns. He is currently engaged in the negotiations with the Cabinet and Infected Blood Compensation Authority (IBCA). He was recruited to act as one of the first volunteers for the compensation process with IBCA and is active in the ongoing campaign to ensure that the recommendation of the Infect Blood Campaign report are met. He is also working to provide policy and opportunity to the bleeding disorder community in NI to live full and active lives.
Values
“Our primary motivation at all times is the wellbeing of people in Northern Ireland who are affected by bleeding disorders. We seek to be a truly inclusive cross-community group which acts with transparency, honesty and accountability to members. Our work aims to empower the bleeding disorders community in Northern Ireland and make the lives of people affected by bleeding disorders easier where possible.”
Mission statement
Haemophilia NI aims to support people affected by bleeding disorders through:
• Advocating to ensure access to the best medical treatment and social support
• Fostering Community and support networks between those affected by bleeding disorders
• Campaigning for Justice for all those affected by contaminated blood
• Equipping Patients with Knowledge to manage their bleeding disorder and live independently
Vision
“A future where all people in Northern Ireland affected by bleeding disorders can live life to the full.”
Meet Our Board
Trusted Partners
Discover more about our partners by clicking on their profiles.
Vice Chair – Dr. William McKeown
William is a patient with Severe Haemophilia A from Bangor, County Down. He is proud husband to Ruth and father to twins Bethany and Michael. William is a Consultant Geriatrician and Stroke Physician and as such as a particular interest in promoting successful ageing for people with bleeding disorders. William is a member of the European Haemophilia Consortium Steering Committee, the European Haemophilia Consortium Youth Committee and the European Haemophilia Safety Surveillance Group Steering Committee.
Treasurer – Collette McAfee
Collette McAfee is a Trustee, Treasurer and founding member of Haemophilia NI. As treasurer she manages the accounts and prepares the annual accounts for inspection by the auditor for submission to the Charities Commission. Collette worked as a Sister and Clinical Nurse Specialist in the Belfast Comprehensive Care Centre where she worked for 35 years.
Trustee –
Rachel Olliver
Rachel has been a Trustee with Haemophilia NI since 2022 and is primarily involved in organising events. Rachel is a mother of two children, her eldest son has Severe Haemophilia A. As such Rachel has a particular interest in promoting community support and patient advocacy for those affected with bleeding disorders in NI.
Trustee –
Daisy Grattan
Daisy has been a Trustee with Haemophilia NI since 2023. Following her eldest son’s diagnosis of Severe Haemophilia A and her status as a carrier of Severe Haemophilia A, a medical condition she had no knowledge of Daisy’s world fell apart. With help and support from the local Haemophilia Clinic and getting to know other people managing and living bleeding disorders she managed this challenging time. Daisy now has 3 more boys, with 1 more diagnosed with Haemophilia. Daisy now wants to help and support other people affected by bleeding disorders.
Trustee –
Mary-Anne Jess
Mary-Anne became a trustee for Haemophilia NI in 2024. Mary-Anne is driven by her personal experience as a mother to a 3-year-old son with Severe Haemophilia A. Navigating the challenges and anxieties that come with having a loved one with a bleeding disorder has had a transformative impact. Mary-Anne is passionate about providing the same support, resources, and a sense of community to other families facing similar challenges. She currently works as a fitness and nutrition coach, previously lecturing in physiotherapy and having completed a PhD.
Mary-Anne is married to Alex, a dentist, they have a 7-year-old daughter who is a brilliant help with her little brother. As a family, they strive to maintain balance, health and resilience.
Trustee –Sarah Shelley
Sarah has been a trustee with Haemophilia NI since 2022. Her family has a history of Severe Haemophilia A and two of her children are affected. Sarah is a carrier.
Sarah has worked and volunteered for several years now to help create opportunities to grow and reach out to the haemophilia community. Meeting members of the bleeding disorder community has given Sarah many friends and is what she continues to focus on as a Trustee.
History of Haemophilia Northern Ireland (HNI)
Haemophilia NI was founded in 2017 and received its charitable status on 18 Jan 2021 and was primarily focussed on supporting families and adults affected by bleeding disorders. Haemophilia NI is a small charity run exclusively by unpaid volunteers. Over time Haemophilia NI has expanded its aim to provide support to people affected by bleeding disorders through:
· Patient advocacy to ensure access to the best medical treatment and social support.
· Fostering community support networks between those affected by bleeding disorders.
· Campaigning for justice for all those affected by contaminated blood.
· Equipping patients and families with knowledge to manage their bleeding disorder and live independently.
Over the years, Haemophilia NI has established a strong network of individuals and families, fostering a sense of community among those affected by haemophilia. Haemophilia NI also communicates and co-operates with its fellow haemophilia charities both in the UK and in Ireland.
Haemophilia NI now plays a vital role in supporting individuals with bleeding and their families in Northern Ireland. Through education, peer support, and advocacy, it has helped improve the quality of life for those affected by bleeding disorders.
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