Rare insights

Rare insights

National quality standard awarded to PSPA in recognition of outstanding volunteer support

By admin

10 August 2026

Rare insights

Wish you were here! Kidney failure, travel and me

By Joe Rumney, RARE Revolution

10 August 2026

Rare insights

Jack McGovern Coats’ Disease Foundation celebrates 20 years of hope, progress, and the pursuit of a cure

By admin

7 August 2026

Rare insights

Beyond childhood: why access to SMA treatment in Ukraine remains a lottery

By CONTRIBUTOR

7 August 2026

Rare insights

“It’s a marathon, not a sprint”: learning to live with myositis

By Becky Pender, RARE Revolution

1 August 2026

Rare insights

Staying wild: has the sun set on the zebra mascot?

By Nicola Miller, RARE Revolution

29 July 2026

Rare insights

The power of community: inside the unique culture of the International PBC Summit 2026

By Becky Pender, RARE Revolution

29 July 2026

Rare insights

How a patient advocacy group transformed one of the world’s smallest rare disease communities into a global research network

By admin

27 July 2026

Rare insights

The Lilly and Blair Foundation announces inaugural Strategic Research Grant Awards

By admin

27 July 2026

Rare insights

When hope changes: living with drug-resistant epilepsy

By CONTRIBUTOR

22 July 2026

Rare insights

145 landmarks across Australia and New Zealand light up for National Eosinophilic Week

By admin

21 July 2026

Rare insights

Every story counts: how understanding the diagnostic journey could help transform rare disease care

By CONTRIBUTOR

16 July 2026

Rare insights

Beyond the diagnosis—rights, access and everyday realities

By Nicola Miller, RARE Revolution

15 July 2026

Rare insights

SMA: why adult support must keep up with medical progress

By CONTRIBUTOR

13 July 2026

Rare insights

From charity to MedTech innovator: Keep Me Breathing launches 1,000-mile ‘Ride for Rare’ validation challenge for wearable CO2 monitor

By admin

10 July 2026

Rare insights

CureDuchenne launches ‘A Cure Can’t Wait’ PSA Campaign, using the power of a birthday to inspire public action for Duchenne muscular dystrophy

By admin

10 July 2026

Rare insights

The invisible struggle: charting the complex reality of CIDP

By Nicola Miller, RARE Revolution

8 July 2026

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