This recently published peer reviewed academic paper (Yuan et al. 2025) recommends that patient support groups push for chronic cluster headaches to be recognised as a rare disease. Rare disease status means access to currently unavailable research funding streams and makes it financially viable for pharmaceutical companies to develop treatments (see here Dept. Of Health and Soc. Care 2021). I suspect the paper may be controversial, but either way, it proposes a way for more money to be invested into helping all our community - something we all desperately need.
Will OUCH work towards this?
References
Department of Health and Social Care. Policy Paper. The UK Rare Diseases Framework. Jan 2021 https://www.gov.uk/government/publications/uk-rare-diseases-framework/t… Accessed Oct. 2025.
Yuan H, Hoffmann J, Ruiz de la Torre E, Marmura MJ, Peres MFP. Chronic cluster headache is a rare disease: Implications for diagnosis, treatment and public health. Cephalalgia. 2025;45(8). doi:10.1177/03331024251369752
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Submitted by Phil - OUCH UK on Mon, 27/10/2025 - 08:28
PermalinkThank you for this Lotte.
Thank you for this Lotte.
As far as I'm aware, our chairman is the world leading authority on Cluster Headache and trigeminal autonomic cephalagias, his papers are cited at least 3 times in Yuan's atricle and I believe he's currently researching CGRP and it's involvement in CH pathophysiology, so of course we'll be pushing in every direction possible for extra funding.
We enjoy a good read, which is a necessity for an organisation like OUCH; I'm glad to see you do too.