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IN the know

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

By Amy Gaviglio, Connetics Consulting
17 November 2025

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

By Nicola Miller, RARE Revolution
3 November 2025

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

By Henry Burkitt, Oxygen Strategy
27 October 2025

Tiptoeing the stepping stones to success in rare disease medicine launches

By Owen Marks, Omgen
13 October 2025

INnovation

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“Spray and pray marketing no longer works”: finding the moments of opportunity

By Nicola Miller, RARE Revolution
10 November 2025

How innovative trial designs de-risk drug development in rare diseases

By CONTRIBUTOR
6 October 2025

Predicting cancer prognoses and responses to treatment

By Julie Penfold, RARE Revolution
21 July 2025

From stem cells to tiny organs—pioneering advanced testing models

By Shanzeh Mumtaz Ahmed, RARE Revolution
7 July 2025

IN motion

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Dr Amélie Lothe: the rationale, design, ethical considerations and impact of open label extensions

By Nicola Miller, RARE Revolution
17 November 2025

Hemal Somaiya: finding the moments of opportunity in pharmaceutical marketing

By Nicola Miller, RARE Revolution
10 November 2025

Andrés Moreno-Estrada and Carmina Barberena-Jonas: building scientific independence in LATAM

By Emma Bishop, RARE Revolution
8 September 2025

Dr David Kuter: On a pipeline therapy for haematological disorders

By Nicola Miller, RARE Revolution
1 September 2025

Women IN RARE

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Serene Forte of Forte BioConsulting, LLC

By CONTRIBUTOR
17 November 2025

Wendy Erler of Sarepta Therapeutics

By CONTRIBUTOR
3 November 2025

Holly Landrum Peay of Faegre Drinker Consulting

By CONTRIBUTOR
20 October 2025

Stacy Pike-Langenfeld of KrabbeConnect

By CONTRIBUTOR
6 October 2025

INcognito

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incognito: the secret life of a…rare disease board trustee

By CONTRIBUTOR
25 August 2025

incognito: the secret life of a…community CEO

By CONTRIBUTOR
11 August 2025

incognito: the secret life of an…advocacy group CEO

By CONTRIBUTOR
28 July 2025

incognito: the secret life of a…research CEO

By CONTRIBUTOR
14 July 2025

IN the thick of it

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Voices united: addressing the unmet needs of patient advocacy groups

By Emma Bishop, RARE Revolution
10 November 2025

Putting you in the heart of the rare community – Action FCS

By CONTRIBUTOR
10 November 2025

Putting you in the heart of the rare community – Ring20 Research and Support UK CIO

By CONTRIBUTOR
27 October 2025

Putting you in the heart of the rare community – Action for XP

By CONTRIBUTOR
13 October 2025

INsights

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What does a good quality of life look like to you?

By Emma Bishop, RARE Revolution
17 November 2025

How does your condition impact your daily life the most?

By Emma Bishop, RARE Revolution
10 November 2025

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

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 person

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ISPOR Europe 2025, Tuesday 11th November—view from a newbie

By Rebecca Stewart, RARE Revolution
17 November 2025

The real conversations at World Orphan Drug Congress Europe

By Rebecca Stewart, RARE Revolution
5 November 2025

IN the loop

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

By CONTRIBUTOR
27 October 2025

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

By Florence Cornish, life sciences writer
20 October 2025

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

By CONTRIBUTOR
13 October 2025

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

By Florence Cornish, life sciences writer
29 September 2025

IN the pipeline

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Best-in-class anti-CD38 therapy for ITP

By Nicola Miller, RARE Revolution
8 September 2025

IN the round

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MexVar: Helping to increase the scientific independence of Mexico

By Julie Penfold, RARE Revolution
6 October 2025

From songlines to science: Bridging healthcare and Indigenous culture

By Emma Bishop, RARE Revolution
14 July 2025

Solving the unsolvable: a revolutionary new model for diagnosing rare diseases

By Emma Bishop, RARE Revolution
30 June 2025

IN the spotlight

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Revolutionising clinical trials: One2Treat’s patient-centric approach to drug development

By Nicola Miller, RARE Revolution
4 August 2025

AlphaRose Therapeutics on doing things differently

By Julie Penfold, RARE Revolution
23 June 2025
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