IN the know

IN the know

Newborn screening: when the same screen results in different outcomes—and why universality isn’t enough

By Amy Gaviglio, Connetics Consulting

17 November 2025

IN the know

How does your condition impact your daily life the most?

By Emma Bishop, RARE Revolution

10 November 2025

IN the know

Turning the tide for rare from the inside: the first 100

By Nicola Miller, RARE Revolution

3 November 2025

IN the know

Do you feel that industry understands the importance of ‘quality of life’ for the rare disease population?

By Joe Rumney, RARE Revolution

3 November 2025

IN the know

Disrupting the diagnostic odyssey: Inside the Crick Summit on Rare Disease Reform

By Henry Burkitt, Oxygen Strategy

27 October 2025

IN the know

If you/your advocacy organisation have participated in any co-design activities with industry, how would you rate your experience of taking part?

By Joe Rumney, RARE Revolution

27 October 2025

IN the know

Aberdeen’s life sciences ecosystem: Building innovation in Scotland’s North East

By CONTRIBUTOR

27 October 2025

IN the know

Finding your feet in the field: Lessons from those in the life sciences

By Florence Cornish, RARE Revolution

20 October 2025

IN the know

RARE Revolution poll finds diagnostic pathways and service provision is failing patients

By Julie Penfold, RARE Revolution

20 October 2025

IN the know

If you/your advocacy organisation have participated in any co-design activities with industry, did you feel the outcomes reflected your community’s input to your satisfaction?

By Joe Rumney, RARE Revolution

20 October 2025

IN the know

Tiptoeing the stepping stones to success in rare disease medicine launches

By Owen Marks, Omgen

13 October 2025

IN the know

Clinical trials using biomarkers and why randomised control studies are unethical in rare

By CONTRIBUTOR

13 October 2025

IN the know

RARE Revolution poll reveals patient needs are worryingly overlooked in clinical trials

By Julie Penfold, RARE Revolution

13 October 2025

IN the know

If you/your advocacy organisation have participated in any co-design activities with industry were the activity/project outcomes fed back to you?

By Joe Rumney, RARE Revolution

6 October 2025

IN the know

Strengthening rare-disease pharmacovigilance with curated real-world data

By Lucy Fulford-Smith, TMC

29 September 2025

IN the know

Have you or your advocacy organisation taken part in any co-design activities or projects with industry?

By Joe Rumney, RARE Revolution

29 September 2025

IN the know

The power of words: How should we write about science?

By Florence Cornish, RARE Revolution

29 September 2025

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