Authors: Professor Sinisa Savic, Consultant Immunologist, Leeds Teaching Hospitals NHS Trust and Chair of the British Society for Immunology Clinical Professional Network, Dr. Patrick Yong, Consultant Immunologist, Frimley Health NHS Foundation Trust, Dr. Tomaz Garcez, Consultant Immunologist, Manchester University NHS Foundation Trust, Dr. Anthony Dorr, Consultant Immunologist, Barts Health NHS Trust, Emily Carne, Nurse Consultant, Immunodeficiency Centre for Wales & Angela Metcalfe, CEO, HAE UK
KalVista organised and funded a meeting that led to this publication and paid honoraria to the authors. The authors had final editorial control.
The NHS is evolving, with a renewed emphasis on patient-centred care and supporting individuals to take an active role in managing their own health. This shift is particularly pertinent in rare diseases, where unique challenges often mean care is highly-tailored to each person. The UK Rare Diseases Framework[i] and most recent England Rare Diseases Action Plan[ii] reflect a national commitment to improving the lives of those affected by these often complex and debilitating conditions.
The case for individualised care in HAE
Hereditary Angioedema (HAE), a rare inherited condition that affects around 1,000 to 1,500 patients in the UK,[iii] serves as a compelling case study for the critical importance of individualised care. HAE manifests as unpredictable and potentially life-threatening episodes of swelling[iv], which, despite advancements in treatment, continue to pose significant challenges for patients and the NHS. Patients frequently face delayed diagnoses[v], often enduring years of uncertainty and navigating multiple hospital departments before reaching specialists familiar with HAE. This fragmented journey affects quality of life and can lead to unnecessary procedures, placing added pressure on NHS services.
Defining individualised care in HAE means moving beyond a one-size-fits-all approach to recognise the wide variation in how the condition presents. No two people experience HAE in the same way. Some have frequent, severe attacks whilst others may have milder or less regular symptoms.[vi] Even within the same individual, patterns can shift over time. This is why HAE care must be flexible, responsive and built around each person’s evolving experience and needs.
To deliver truly individualised care, clinicians need to understand what matters most to each patient in terms of their lifestyle, priorities and own experience of the disease. This includes knowing how they recognise attack triggers, how symptoms affect their daily life and how confident they feel in managing their condition. When care reflects these realities, patients are more likely to feel in control, follow through on treatment plans, and engage in shared decision-making with their healthcare team.
Making this happen requires joined up working across the NHS. Multidisciplinary team (MDT) collaboration is key, with smooth information-sharing between specialties. Embedding this approach into service design will help move rare disease care from reactive to proactive and from generic to genuinely individualised.
Overcoming barriers and seizing opportunities for improvement
Despite the clear case for individualised care, significant barriers persist in its consistent delivery for HAE patients. Some of these challenges, and the opportunities for addressing them were recently explored in the white paper ‘Tackling Unmet Need in Hereditary Angioedema’. These include critical gaps in service provision, a pervasive lack of awareness among healthcare professionals outside specialist centres and inconsistent access to expert care. While the majority of patients do not rely on Accident & Emergency departments for acute attack management, those who do often face limited staff awareness and understanding of HAE. Combined with prescriptive long-term prophylaxis commissioning policies, this highlights systemic weaknesses that demand attention.
To transform individualised care from an aspiration into a reality for HAE patients, we must focus on strategic improvements in service delivery:
- Integrated care pathways: Developing and implementing integrated care pathways that streamline diagnosis and management, ensuring patients are directed to appropriate specialist care promptly.
- Rare disease networks: Strengthening rare disease networks to facilitate knowledge sharing, consistent standards of care and equitable access to specialist expertise across the UK.
- Digital tools: Leveraging digital health solutions for patient monitoring, education and communication, enabling more proactive and individualised management of HAE.
Empowering patients and healthcare professionals
Individualised care benefits both patients and supports a more sustainable and responsive NHS. For people living with HAE, care that reflects their individual needs, preferences and experience of the disease can make a meaningful difference; helping them feel more confident, take action earlier and reduce the emotional and physical toll of unpredictable attacks.
While specialist input remains important, improvements in care pathways and coordination can help ensure patients receive timely, appropriate support. Even small changes in how services are designed and delivered, such as clearer more tailored treatment plans and better communication between teams, can reduce delays and improve outcomes.
Ultimately, the lessons from HAE point to a broader opportunity for improvement: embedding individualised care into the way services for rare diseases are commissioned, designed and delivered. This will require continued collaboration between the NHS, industry, patient organisations and professional bodies. By working together, we can ensure that rare disease pathways are efficient and patient centred. HAE offers a valuable example of how individualised patient care can improve lives and inform better care for other rare conditions across the NHS.
MAT-UNB-GB-0013
Date of preparation: November 2025
[i] UK Rare Diseases Framework. GOV.UK. Published January 9, 2021. Available at: https://www.gov.uk/government/publications/uk-rare-diseases-framework Last accessed: November 2025
[ii] England Rare Diseases Action Plan 2025. GOV.UK. Published February 28, 2025. Available at: https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025 Last accessed: November 2025
[iii] Yong PFK, Coulter T, El-Shanawany T, et al. A National Survey of Hereditary Angioedema and Acquired C1 Inhibitor Deficiency in the United Kingdom. J Allergy Clin Immunol Pract. 2023;11(8):2476-2483. Available at: https://doi.org/10.1016/j.jaip.2023.04.035 Last accessed: November 2025
[iv] HAE UK. What is HAE?. Available at: https://www.haeuk.org/what-is-hae/ Last accessed: November 2025
[v] Henao MP, Craig T, Kraschnewski J, Kelbel T. Diagnosis and screening of patients with hereditary angioedema in primary care. Ther Clin Risk Manag. 2016;12:701-711. Available at: https://doi.org/10.2147/tcrm.s86293 Last accessed: November 2025
[vi] HAE UK. Living with HAE. Available at: https://www.haeuk.org/what-is-hae/living-with-hae/ Last accessed: November 2025
