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Posted 4 weeks ago by Jo McPherson

Jennifer Jones has a PhD in Medical Sociology from the London School of Hygiene and...

 Journals and Articles / 41 views

Posted 2 months ago by Jo McPherson

Breaking Down Barriers is a network of 30 organisations working together to improve the lives...

 Patient Groups / 72 views

Posted 2 months ago by Jo McPherson

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

 Journals and Articles / 98 views

Posted 1 year ago by Jo McPherson

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

 Journals and Articles / 496 views

Posted 1 year ago by Jo McPherson

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

 Patient Groups / 579 views

Posted 2 years ago by Jo McPherson

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

 Learning Resources / 705 views

Posted 2 years ago by Jo McPherson

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

 Rare Disease Guidelines / 732 views