Forgotten Patients: Overlooked Diseases
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We help people with complex symptoms find a diagnosis and access support. Some will have a rare genetic cause for their symptoms while others may present with unusual features of a recognised disease. Many affected individuals feel lost and forgotten in the health system and that their medical issues are being overlooked.
Life without a diagnosis can be difficult. Our multidisciplinary group seeks to provide evidence-based signposting, resources, and education for individuals, families, and healthcare professionals. This is a diverse and poorly understood area of medicine, so another aim of our charity is to facilitate research.
Do join us on our journey by attending our regular online meetings, helping us build resources and deliver research or by providing much needed funds.
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Terminology can be very complicated. Here are some definitions
Recognizing Rare Disease Day – February 28, 2024
Many people living with medically unexplained persistent physical symptoms may, in fact, have one of the 7,000+ known rare diseases—yet diagnosis and support remain significant challenges. On Rare Disease Day, we stand with patients, families, and healthcare professionals working to improve awareness, research, and care for those affected.
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Join the global movement to shine a light on rare diseases and advocate for better understanding and support.
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Learn more at www.RareDiseaseDay.org
Medically unexplained symptoms: Our multidisciplinary conference
Breaking the cycle of tests, referrals and unsuccessful treatments
Trying to help people with medically unexplained symptoms (MUS) is challenging.
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This remains a widely ignored and under-researched topic despite the large number of affected individuals and huge sums of wasted money and resources. Healthcare professionals feel frustrated whilst patients feel lost, overlooked, and forgotten in the health system. Without a clear diagnosis, sufferers often find themselves in a cycle of tests, referrals, and unsuccessful treatments without achieving a resolution of their problems. Many experience mental health problems.
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These problems were recently discussed during an intensive 1-day conference at the Royal Foundation of St Katharine.​​​​​​
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Conference report
​​​​​​​We are pleased to share the report from our conference, "Medically Unexplained Symptoms: A Multidisciplinary Conference – Addressing the Challenges of Medically Unexplained Symptoms." This event brought together experts from various fields to explore the complexities of MUS, discuss innovative approaches, and highlight the need for improved patient care. The report captures key discussions, insights, and recommendations from the conference. You can access the full PDF here: