Posted 9 months ago by Jo McPherson

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

 Journals and Articles / 329 views

Posted 10 months ago by Jo McPherson

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

 Patient Groups / 423 views

Posted 1 year ago by Jo McPherson

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

 Learning Resources / 566 views

Posted 1 year ago by Jo McPherson

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

 Rare Disease Guidelines / 588 views