Rare insights

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

Rare insights

Equal stakeholders: how FESCA is preparing patient advocates to reshape scleroderma research

By Nicola Miller, RARE Revolution

6 July 2026

Rare insights

EURORDIS Rare Barometer reveals mental health crisis in rare disease community

By admin

3 July 2026

Rare insights

Sickle Cell Disease Association of America Inc. appoints Akua Okunseinde to board

By admin

3 July 2026

Rare insights

SAVE THE DATE: 2nd International Clinical Care Symposium on Spinal Muscular Atrophy

By admin

3 July 2026

Rare insights

Beyond the surface: the invisible impact of myasthenia gravis

By CONTRIBUTOR

1 July 2026

Rare insights

Beyond the platelet count. The lifelong burden of immune thrombocytopenia

By Nicola Miller, RARE Revolution

1 July 2026

Rare insights

From collapse to new kneecaps: a dystonia journey

By CONTRIBUTOR

1 July 2026

Rare insights

Charity reveals diagnosis for rare brain diseases hasn’t improved in 10 years

By admin

29 June 2026

Rare insights

VictoryRoad studios acquires life-story rights of athlete turned advocate JD Slajchert for feature documentary set to debut on Victory Road+

By admin

29 June 2026

Rare insights

“Hear the unheard” for World Scleroderma Day 2026

By Nicola Miller, RARE Revolution

29 June 2026

Rare insights

Immune Thrombocytopenia (ITP): an infographic

By admin

24 June 2026

Rare insights

How I became my own researcher: my MOGAD diagnostic journey

By CONTRIBUTOR

24 June 2026

Rare insights

Mastocytosis: before, during and after diagnosis

By Emma Bishop, RARE Revolution

17 June 2026

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