Jo McPherson - M4RD

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6 item(s) found

Alex The Leukodystraphy Charity

Posted 3 years ago

Alex TLC is a trusted and experienced organisation offering support and information for all those...

Patient Groups / London / 1385 views / Popular

Making the Unseen Seen: rare disease and the lessons learned from the COVID-19 pandemic

Posted 4 years ago

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

Journals and Articles / 1506 views / Popular

A new approach to shortening the diagnostic odyssey

Posted 5 years ago

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

Journals and Articles / 2201 views / Popular

Genetic Alliance UK – COVID19 Information Hub

Posted 5 years ago

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

Patient Groups / 1947 views / Popular

Understanding neurofibromatosis type 1 (NF1)

Posted 6 years ago

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

Learning Resources / 2164 views / Popular

The Ehlers-Danlos Syndromes Toolkit

Posted 6 years ago

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

Rare Disease Guidelines / 2370 views / Popular

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Meet Megan Pullein – Research Project Manager
8th July 2025
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27th May 2025
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