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Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...

 Learning Resources / 2445 views / Popular

The Royal Society of Medicine (RSM) is a leading provider of high-quality continuing postgraduate education...

 Medical Institutions /  London / 2089 views / Popular

Dan Jeffries is an incredibly funny and relatable speaker. His talk takes you through his...

 Speakers /  South West / 2038 views / Popular

This toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis...

 Rare Disease Guidelines / 1796 views / Popular

Neurofibromatosis type 1 (NF1) is a neurogenetic condition that approximately 1 in every 2,700 people...

 Learning Resources / 1610 views / Popular

People living with rare disease often face a diagnostic odyssey, typically waiting years for a...

 Journals and Articles / 1566 views / Popular

Designed to provide easily accessible and up to date information for anyone affected by genetic,...

 Patient Groups / 1488 views / Popular

The idea for AcroTales came about after a project co-ordinated by Dan Jeffries, Tessa Murdoch and...

 Learning Resources / 1090 views / Popular

At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates...

 Journals and Articles / 1035 views / Popular

ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...

 Patient Groups /  UK / 1004 views / Popular

Addison’s Disease is a rare endocrine condition where the adrenal glands cease to function, so that your...

 Patient Groups /  UK / 954 views / Popular

The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...

 Patient Groups /  UK / 940 views / Popular

Huntington's Disease Association exists to help people living with Huntington's disease to live a better...

 Patient Groups /  UK / 921 views / Popular

myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...

 Patient Groups / 919 views / Popular

Wolfram Syndrome UK (WSUK) is the only charity and website in the UK for this...

 Patient Groups /  UK / 910 views / Popular

Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...

 Patient Groups /  UK / 905 views / Popular

The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...

 Patient Groups /  UK / 902 views / Popular

The MPS Society provides support to families affected by one of 25 rare, life limiting...

 Patient Groups /  UK / 891 views / Popular

Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...

 Patient Groups /  UK / 873 views / Popular

Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...

 Patient Groups /  UK / 856 views / Popular

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