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IN the know

IN the know

The Act for Ultra-Rare Coalition – growing momentum for an overlooked population

By Emma Bishop, RARE Revolution

13 July 2026

IN the know

Who decides what your health is worth?

By Henry Burkitt, Oxygen Strategy

6 July 2026

IN the know

RARE Revolution poll results reveal Rare Disease Day campaigns helped reach more people

By Karen Roberts, RARE Revolution

6 July 2026

IN the know

Thinking deeply when thinking is hardest: the psychology of joining a clinical trial

By Keith Berelowitz, trialport

22 June 2026

IN the know

From rare to routine care: could rare therapies be used to treat common conditions?

By Florence Cornish, RARE Revolution

8 June 2026

IN the know

The weight they carry: patient organisations and the real cost of newborn screening advocacy

By Amy Gaviglio, Connetics Consulting

25 May 2026

IN the know

Patient centricity is the mission. Patient inclusion is the operating model

By CONTRIBUTOR

18 May 2026

IN the know

For healthcare professionals, how important are metrics when measuring the “success” of your Rare Disease Day activities?

By Emma Bishop, RARE Revolution

18 May 2026

IN the know

For healthcare professionals, did you see a measurable impact from your Rare Disease Day activities?

By Emma Bishop, RARE Revolution

11 May 2026

IN the know

How important are metrics when measuring the “success” of your Rare Disease Day activities?

By Emma Bishop, RARE Revolution

4 May 2026

IN the know

Do you find you have better engagement/successful campaigns on Rare Disease Day or on your awareness day?

By Emma Bishop, RARE Revolution

27 April 2026

IN the know

Did your increased Rare Disease Day campaign engagement help you reach a different or new audience?

By Emma Bishop, RARE Revolution

20 April 2026

IN the know

From promise to patient: closing the gap between policy and delivery in rare disease

By Owen Marks, Omgen

6 April 2026

IN the know

For advocates: did you see measurable impact from your Rare Disease Day activities?

By Emma Bishop, RARE Revolution

6 April 2026

IN the know

Youth advocacy and the limits of social media-centred models

By Michael Wilbur, MW Advocacy Solutions

30 March 2026

IN the know

Do you have a clear understanding of how to compliantly raise awareness for study/trial awareness to the public?

By Emma Bishop, RARE Revolution

16 March 2026

IN the know

Fostering greater collaboration in rare disease research

By Becca Bull, RARE Revolution

16 March 2026

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