Rare insights

Rare insights

Vitiligo: my changing sense of self

By Joe Rumney, RARE Revolution

26 November 2025

Rare insights

The co-design revolution: how empowering patients is the future of clinical trials

By Becky Pender, RARE Revolution

19 November 2025

Rare insights

Lessons we can all learn from my first, and only, patient to date with idiopathic multicentric Castleman’s disease (iMCD)

By CONTRIBUTOR

12 November 2025

Rare insights

Silent and unseen. Mental health and the rare disease caregiver

By Paul Kidwell

12 November 2025

Rare insights

Keep Me Breathing unveils VENTO: a groundbreaking wearable CO₂ monitor born from the rare disease community

By admin

5 November 2025

Rare insights

Fashion meets philanthropy at CureDuchenne’s second annual ladies luncheon

By admin

29 October 2025

Rare insights

Radio 4 Appeal highlights urgent need for research into rare brain disease

By admin

23 October 2025

Rare insights

Western Australia’s largest philanthropic gifts is set to change the lives of children and families living with rare or undiagnosed diseases

By admin

23 October 2025

Rare insights

My journey with congenital erythropoietic porphyria (CEP) and the light I found through art

By CONTRIBUTOR

14 October 2025

Rare insights

First U.S. national genomic newborn screening initiative launched with $14.4 million NIH Award

By admin

13 October 2025

Rare insights

Kabuki Syndrome Foundation appoints new Executive Director as organisation expands leadership to drive research progress

By admin

13 October 2025

Rare insights

To the ends of the earth – a journey for Addison’s disease awareness

By CONTRIBUTOR

7 October 2025

Rare insights

SMA Europe launches new clinical trials finder to support access to clinical trials and accelerate progress in SMA treatment

By admin

30 September 2025

Rare insights

EB charity DEBRA appoints new Chair of Trustees

By admin

29 September 2025

Rare insights

CureDuchenne announces Fuerza 2025: A landmark conference in Mexico City on October 25 focused on Duchenne and Becker muscular dystrophy

By admin

29 September 2025

Rare insights

My unexpected journey: life with a rare liver tumour

By CONTRIBUTOR

24 September 2025

Rare insights

HBA Support launch Brain Aneurysms and Beyond Podcast

By admin

22 September 2025

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