At the Heart of Our Work Is Patient Advocacy
Rather than dismiss the unknown, we aim to build a culture in healthcare that welcomes curiosity, encourages deeper exploration, and places humanity at the centre of care.
Listening to Patients
Patient Representation
Evidence-Based Advocacy
Driving Change
“Advocacy requires us to listen to patients’ stories, recognise the limits of our knowledge, and create systems that help clinicians explore further when answers are unclear.”
Dr Adrian Tookman, Chair
​​​​​Personal Story
A reflection shared by a retired clinician
“Last week, I was contacted by two of my former EDS patients who have no specialised support the city of Sheffield or its surrounding areas. Both were managing their problems very well but were uncertain about new symptoms. As a retiree, I am no longer able to advise them, but pointed them to services for other conditions. I mentioned this group, and they were aware of many other individuals with EDS symptoms who also lacked medical support. The most worrying and inexplicable stories include antipathy and occasional hostility from some GPs and gastroenterologists. I hope this is a local problem, but I doubt it.”
We created Forgotten Patients, Overlooked Diseases to support individuals and families who feel lost in the healthcare system. They are often without a diagnosis or living with an incorrect diagnosis
Our multidisciplinary team, with members from the UK, Germany, and beyond, is committed to listening, understanding, and advocating for those who are falling through the cracks of the healthcare system
Why This Matters
Many patients:
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Have rare diseases that remain undiagnosed or unrecognised
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Have common conditions but are misdiagnosed or mislabelled
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Are left in limbo, without a clear path forward
Clinicians’ perceptions shape a patient’s journey through the system. Without a diagnosis, individuals can feel reduced to a “case”, rather than a person. An incorrect label or no label at all can cause distress, delays, and inappropriate care.
A correct diagnosis — even when treatment options are limited — can restore dignity and clarity.