Forgotten Patients, Overlooked Diseases

Forgotten Patients, Overlooked Diseases is a registered UK charitable incorporated organisation dedicated to supporting individuals with complex, rare, or medically unexplained symptoms that are often overlooked or inadequately addressed within the healthcare system. The charity operates under the registration number 1202442.

Mission and Objectives

The organisation focuses on developing resources and providing support and guidance to patients and families who face challenges in obtaining diagnosis, treatment, or recognition for their health conditions. Their work primarily benefits those with rare genetic causes for their symptoms or unusual presentations of recognised diseases, who frequently feel neglected or lost in the mainstream health services.

Key Activities

• Resource Development: Creating educational materials and guides to help patients better navigate the healthcare system, particularly in interactions with general practitioners.
• Patient Support: Offering signposting and assistance for individuals and families who struggle to find adequate medical help elsewhere.
• Awareness and Advocacy: The charity raises awareness about overlooked diseases and medically unexplained symptoms (MUS) through multidisciplinary conferences and public events, such as those coinciding with Rare Disease Day.

Conferences and Publications

Forgotten Patients, Overlooked Diseases organises multidisciplinary conferences that bring together experts from various medical and scientific fields to address the complexities of medically unexplained symptoms. These events aim to foster innovative approaches and improve patient care by sharing insights and encouraging collaboration. Reports and session recordings from these conferences are made publicly available to extend their impact.

Significance

The charity plays an important role in challenging the traditional medical paradigms around medically unexplained symptoms, highlighting issues such as misdiagnosis and the need for a more nuanced understanding of complex conditions. Their advocacy work also touches on patient safety concerns and the socio-economic impacts of mislabeling or overlooking difficult cases within the healthcare system.

By focusing on "forgotten patients," the organisation strives to ensure that neglected health issues gain recognition and that affected individuals receive the support and medical attention they deserve.

Note: This summary is based on publicly available information from official charity registers and the organisation’s outreach materials.

[1] https://www.forgottenpatients.org [2] https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5208887/charity-overview [3] https://www.charitychoice.co.uk/forgotten-patients-overlooked-diseases [4] https://find-and-update.company-information.service.gov.uk/company/CE031777 [5] https://bjgplife.com/medically-unexplained-symptoms-four-perspectives/