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IN the know

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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

Strengthening rare-disease pharmacovigilance with curated real-world data

By Lucy Fulford-Smith, TMC
29 September 2025

Employing advanced analytics and artificial intelligence in rare-disease pharmacovigilance

By Lucy Fulford-Smith, TMC
22 September 2025

INnovation

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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

Epilepsy misdiagnosis rates could be cut by almost 70% with the help of an AI prediction tool

By Julie Penfold, RARE Revolution
23 June 2025

IN motion

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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

Sondra Butterworth: Why building trust is the cornerstone of PPIE

By CONTRIBUTOR
25 August 2025

MfRD: RDI-Lancet commission for rare disease

By Emma Bishop, RARE Revolution
18 August 2025

Women IN RARE

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Holly Landrum Peay of Faegre Drinker Consulting

By CONTRIBUTOR
20 October 2025

Stacy Pike-Langenfeld of KrabbeConnect

By CONTRIBUTOR
6 October 2025

Alice Tuff-Lacey of Genomics England

By CONTRIBUTOR
22 September 2025

Nisha Venugopal of Indo US Organization for Rare Diseases

By CONTRIBUTOR
8 September 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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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

Putting you in the heart of the rare community – Childhood Tumour Trust (CTT)

By CONTRIBUTOR
29 September 2025

Putting you in the heart of the rare community – National Scleroderma Foundation

By CONTRIBUTOR
15 September 2025

INsights

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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

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

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

By Julie Penfold, RARE Revolution
20 October 2025

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

By Julie Penfold, RARE Revolution
13 October 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 Emma Bishop, RARE Revolution
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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