Coagulation, Bradykinin, Polyphosphates, and Angioedema Peer reviewed

Management of hereditary angioedema in the UK: a comparison with international guidelines

Cassim Akhoon, Ariharan Anantharachagan, Emily Carne, Samuel Chee and 30 more

Clinical & Experimental Immunology | Sep 7, 2026

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It is concluded that UK access criteria result in a group of HAE patients with persisting unmet need, and greater flexibility in access criteria is recommended, allowing clinical judgement, shared decision-making, and broader measures of disease burden to inform treatment eligibility.

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Hereditary angioedema (HAE) is a rare genetic disorder characterised by recurrent episodes of swelling, which can potentially be life-threatening, resulting in substantial physical, psychological, educational and occupational burden. Treatment of HAE is divided into on-demand treatment for acute attacks and long-term prophylaxis for prevention of attacks, and there are now several effective therapies available. However, in the UK, use of on-demand therapy is intended for attacks defined as clinically significant, and access to long-term prophylaxis is determined primarily by frequency-based criteria. In this policy-focused review, we compare UK access criteria with international guidelines on best practice. We conclude that UK access criteria result in a group of HAE patients with persisting unmet need, and this may have a greater impact in children and young people. In view of this, we recommend greater flexibility in access criteria, allowing clinical judgement, shared decision-making, and broader measures of disease burden to inform treatment eligibility, so we can individualise care and fully meet the needs of these patients.

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Authors

Researchers on this paper

Cassim Akhoon

middle | Royal Free London NHS Foundation Trust

Ariharan Anantharachagan

middle | Lancashire Teaching Hospitals NHS Foundation Trust | ORCID 0000-0003-0179-1150

Emily Carne

middle | Cardiff and Vale University Health Board

Samuel Chee

middle | Lancashire Teaching Hospitals NHS Foundation Trust

Joanne Miller

middle | Oxford University Hospitals NHS Trust

Patrick Yong

first | Frimley Health NHS Foundation Trust | ORCID 0000-0003-1736-2756

Jolanta Bernatoniene

middle | Bristol Royal Hospital for Children | ORCID 0009-0005-2941-9125

Rachel Annals

middle | Hague Academy of International Law

Charu Chopra

middle | NHS Lothian | ORCID 0000-0003-3798-3605

Tanya Coulter

middle | Belfast Health and Social Care Trust

Sarah Denman

middle | St James's University Hospital | ORCID 0000-0003-2749-7996

Anthony Dorr

middle | Barts Health NHS Trust

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Citation

BibTeX

@article{Akhoon2026Management,
  title = {Management of hereditary angioedema in the UK: a comparison with international guidelines},
  author = {Cassim Akhoon and Ariharan Anantharachagan and Emily Carne and Samuel Chee and Joanne Miller and Patrick Yong and Jolanta Bernatoniene and Rachel Annals and Charu Chopra and Tanya Coulter and Sarah Denman and Anthony Dorr and Tariq El-Shanawany and Alexandros Grammatikos and Padmalal Gurugama and Rashmi Jain and Sorena Kiani‐Alikhan and Lucy Leeman and Lorena Lorenzo and Ania Manson and Sadia Noorani and Smita Patel and Arthur Price and Ravi Sargur and Cathal Steele and Catherine Stroud and Stephen Owens and Christine Symons and K C Tan and Michael Tarzi and Scott Hackett and Angela Metcalfe and Sinisa Savic and Tomaz Garcez},
  journal = {Clinical & Experimental Immunology},
  year = {2026},
  doi = {10.1093/cei/uxag056},
  url = {https://doi.org/10.1093/cei/uxag056}
}

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