Forgotten Patients, Overlooked Diseases
Modern Healthcare Can Achieve Incredible Things
Modern healthcare can achieve extraordinary things. Yet many people living with complex, persistent or poorly understood symptoms still struggle to find recognition, answers or appropriate care.
Some remain undiagnosed. Others are misdiagnosed, or live with conditions that do not fit neatly within traditional diagnostic pathways.
Forgotten Patients, Overlooked Diseases exists to change that.
Why we exist
Too many patients fall between the gaps of a healthcare system designed around recognised conditions, established specialties and clear diagnostic pathways.
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Persistent symptoms may remain unexplained or poorly understood.
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Patients can move repeatedly between services, tests and referrals without clear answers.
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Care may become fragmented when symptoms cross specialties.
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People can feel dismissed, isolated or uncertain about where to turn for help.
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Our role is not to assume that every unexplained symptom has the same cause. It is to encourage curiosity, careful investigation, collaboration and respect when the answers are not yet clear.
Our mission
Our mission is to improve recognition, understanding and care for people whose symptoms or conditions are overlooked, poorly understood or difficult to diagnose.
We bring together patients, clinicians, researchers and advocates to challenge diagnostic blind spots, strengthen the evidence base and help create more compassionate, connected and effective healthcare.
Who we are
We are an international, multidisciplinary community bringing together different forms of expertise and experience.
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Healthcare professionals
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Scientists & researchers
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People with lived experience
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Public health experts
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Advocates & communicators
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Ethics & spiritual care
We are united by one aim: to advocate for those who are overlooked in healthcare.
Our purpose
We are an international, multidisciplinary community bringing together different forms of expertise and experience.
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Supporting Overlooked Conditions
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Championing people whose conditions or symptoms are not receiving the recognition or support they need.
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Developing Practical Resources
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Creating accessible information that helps patients, families and professionals navigate complex health journeys.
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Signposting Support Services
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Helping people find relevant organisations, specialist services and sources of trusted support.
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Conducting & Supporting Research
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Building evidence around overlooked conditions, diagnostic uncertainty and patient experience.
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Promoting Education & Awareness
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Sharing knowledge with patients, clinicians and wider audiences through resources, publications and events.
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Advocating for Policy Change
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Using evidence and lived experience to encourage better pathways, recognition and patient-centred systems.
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Our guiding principles
Our approach is holistic and evidence-informed. We believe better care starts with curiosity, collaboration and respect for both evidence and lived experience.
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Listen first
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Patients should be heard, respected and involved in conversations about their own care.
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Stay curious
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Diagnostic uncertainty should encourage thoughtful exploration rather than premature closure.
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Follow the evidence
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Advocacy should be informed by credible research while recognising where knowledge is incomplete.
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Work together
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Complex problems often cross specialties, professions and traditional organisational boundaries.
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Do not duplicate
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We aim to collaborate with existing organisations and strengthen good work already underway.
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Keep care human
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Dignity, compassion and communication remain essential even when diagnosis or treatment is uncertain.
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