Rare insights

Rare insights

500 miles for Mowat-Wilson syndrome: riders cycle from Montreal to New York to raise awareness

By Becky Pender, RARE Revolution

11 August 2025

Rare insights

Mila’s journey with CCHS

By CONTRIBUTOR

6 August 2025

Rare insights

Navigating life with APDS2 and other rare diseases: Tasmin’s story

By CONTRIBUTOR

30 July 2025

Rare insights

$1.1 Million grant funds research on rare neurodevelopmental disorder MEF2C

By admin

28 July 2025

Rare insights

My brother’s journey into the world of neurological challenges

By CONTRIBUTOR

21 July 2025

Rare insights

Landmarks across Australia and New Zealand light up pink and purple to raise awareness during National Eosinophilic Week

By admin

21 July 2025

Rare insights

2nd MENA Congress for Neurogenetic Disorders 2025

By admin

16 July 2025

Rare insights

2nd MENA Congress for Metabolism in Health and Disease 2025

By admin

16 July 2025

Rare insights

Expanding appreciation for the patient journey

By Becky Pender, RARE Revolution

16 July 2025

Rare insights

Science side-by-side

By Becky Pender, RARE Revolution

9 July 2025

Rare insights

Thoughts on life as a carer of someone with a rare disease

By Becky Pender, RARE Revolution

7 July 2025

Rare insights

The fragile ecosystem: how federal policy changes threaten rare disease research and patient care

By Nicola Miller, RARE Revolution

2 July 2025

Rare insights

‘Hadid and I’ (and me!)

By Becky Pender, RARE Revolution

2 July 2025

Rare insights

Calling for implementation of neonatal screening programmes following the WHO resolution on rare diseases

By Becky Pender, RARE Revolution

28 June 2025

Rare insights

A milestone moment: The CPA Research Foundation hosts its first in-person retreat

By admin

26 June 2025

Rare insights

Former NFL, University of Kentucky football star, Art Still, working to shine a spotlight on rare heart disease

By CONTRIBUTOR

25 June 2025

Rare insights

New awards launched to celebrate unsung heroes supporting families living with Dravet Syndrome

By admin

23 June 2025

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