“2025 Annual Report for HNI" 

## Introduction 

The 2025 Annual Report for HNI, highlights community engagement events for individuals with haemophilia/VWD and bleeding disorders in Northern Ireland and serves as a critical document for assessing progress and ongoing efforts to support those living with these complex conditions. Haemophilia, Von Willebrand Disease (VWD), and other bleeding disorders affect a small but significant portion of the Northern Irish population, necessitating robust community engagement strategies to ensure patients receive adequate support, education, and advocacy. This report examines the key challenges encountered when organising community engagement events, exploring the innovative approaches that have been adopted to strengthen the haemophilia community in Northern Ireland, ultimately reinforcing the mission of our Charity - Haemophilia Northern Ireland (HNI) to improve the quality of life for all those affected. 

## Challenges in Organising Community Engagement Events for Haemophilia/VWD and Bleeding Disorders 

Organising community engagement events for individuals with haemophilia, VWD, and bleeding disorders presents a multifaceted range of challenges that demand careful consideration and strategic planning. One of the most significant obstacles is the relatively small and geographically dispersed nature of the affected population in Northern Ireland. Unlike more prevalent conditions, bleeding disorders affect a comparatively limited number of individuals, making it difficult to achieve sufficient event attendance while ensuring that the needs of patients across rural and urban areas are equally addressed. Furthermore, the physical limitations associated with these conditions can deter participation, as individuals with severe haemophilia or VWD may face mobility challenges or concerns about injury risk in public settings. Financial constraints also pose a considerable barrier, as securing adequate funding for events, specialist speakers, medical professionals, and accessible venues requires sustained effort and resourcefulness. Additionally, raising awareness and reducing stigma surrounding bleeding disorders remains an ongoing challenge, as misconceptions within the broader public can hinder meaningful community participation. Coordinating with healthcare professionals, patient families, and advocacy organisations to align schedules and objectives further complicates the logistical planning process, demanding significant administrative capacity from HNI Trustees and volunteers. 

## Innovative Approaches to Community Engagement for Haemophilia/VWD and Bleeding Disorders in Northern Ireland 

In response to these challenges, HNI has adopted a series of innovative and forward-thinking approaches to community engagement that have demonstrated measurable success throughout 2024 and into 2025. The integration of digital platforms has been particularly transformative, enabling HNI to host virtual seminars, webinars, and online support groups that transcend geographical barriers, allowing patients from across Northern Ireland to participate without the physical demands of travel. Social media campaigns have also proven effective in raising awareness, disseminating information about bleeding disorders, and fostering a sense of community among patients, caregivers, and allies. 

To achieve this Haemophilia NI has had to up its game and take advantage of the spotlight focus resulting from the publishing of the Infected Blood Report in May 2025, and the recommendations proposed aim to identify the issues which led to the provision of infected treatment and the impact on individuals and families. It takes seriously its ability to access and inform our community and lobby for their rights, not merely on compensation and influencing its structure through engagement with IBCA, Cabinet Office and 

Government. We will be further engaging with the Government to lobby on the Government Response to the Community Survey, influencing the final policy being laid in the House. 

HNI has further embraced a patient-centered model by co-designing events with individuals who have lived experience of haemophilia and VWD, ensuring that programmes are relevant, accessible, and empowering. Collaborative partnerships with Belfast healthcare trust, schools, and community organisations have broadened the reach of engagement initiatives, facilitating educational workshops and speakers at our engagement events that target diverse demographics, including young patients and newly diagnosed individuals. Additionally, the introduction of peer support networks has created informal yet impactful spaces for shared learning and emotional support, complementing formal medical care. 

HNI has throughout the year connected with the bleeding community through our Women's event in Cookstown, Community Day at the Killyhevlin in Enniskillen, the Ultimate Christmas Experience, where families let their hair down with a community visit to Santa's Grotto this year in Mount Panther, County Downtown and our AGM held in Templepatrick in October. 

In spreading HNI’s influence and attending the European Haemophilia Consortium in Vienna, HNI is learning and developing our experience and role in the broader European bleeding Community. 

We had some changes this past year with the passing of one of our enthusiastic Trustees through illness, and a long-term Trustee who, as a sufferer, progressed in his medical career to achieve Consultant status and became a member of the EHC Steering Cttee. 

HNI continues to work with our sister societies throughout the UK, and with the Irish Society, our land neighbour. 

## Conclusion 

As we look back at the various events organised by HNI throughout the year, as covered in our 2025 Annual Report, it’s clear that while geographical barriers, limited resources, and general awareness of Haemophilia, VWD, and bleeding disorders present challenges, our commitment to connecting with our community has never been stronger. By embracing flexibility through virtual and Actual physical events and focusing on peer support and advocacy, HNI has made significant strides in fostering a sense of belonging and support among those affected by bleeding disorders in Northern Ireland. Moving forward, it will be crucial to continue prioritising innovative and accessible community engagement initiatives that are inclusive of all those impacted by bleeding disorders across Northern Ireland and informed by best practice and evidence. As we formulate the processes of a Forum for Bleeding Disorders in NI.