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

By Nicola Miller, RARE Revolution

1 August 2026

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

By CONTRIBUTOR

16 July 2026

Beyond the diagnosis—rights, access and everyday realities

By Nicola Miller, RARE Revolution

15 July 2026

The invisible struggle: charting the complex reality of CIDP

By Nicola Miller, RARE Revolution

8 July 2026

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

By Nicola Miller, RARE Revolution

6 July 2026

Beyond the platelet count. The lifelong burden of immune thrombocytopenia

By Nicola Miller, RARE Revolution

1 July 2026

“Hear the unheard” for World Scleroderma Day 2026

By Nicola Miller, RARE Revolution

29 June 2026

Immune Thrombocytopenia (ITP): an infographic

By admin

24 June 2026

Digital Spotlights

“Living well”: life with Sjögren’s disease

20 June 2026

Mastocytosis: before, during and after diagnosis

By Emma Bishop, RARE Revolution

17 June 2026

Bridging the gap: the landscape and management of haemophilia B in Saudi Arabia

By Emma Bishop, RARE Revolution

27 May 2026

Digital Spotlights

Primary sclerosing cholangitis (PSC): condition overview and infographic

23 May 2026

Digital Spotlights

Patient power: advocates driving research and policy reform

23 May 2026

Digital Spotlights

Life with PSC: the visible and invisible toll

23 May 2026

Digital Spotlights

Cracking the ‘mission impossible’ of hepatology

23 May 2026

Digital Spotlights

Fire, fuel and frustration: HCP perspective on the unmet needs for primary sclerosing cholangitis (PSC)

23 May 2026

The power of your participation: strengthening data robustness and ethical trial design with natural history data

By CONTRIBUTOR

27 April 2026