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IN the know

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Houston we have a problem: NASA-inspired strategies for rare disease

By Michael Wilbur, MW Advocacy Solutions
30 June 2025

Capturing real-world data: “the right data, at the right time, in the right way”

By Michelle Conway
7 June 2025

The future of rare disease policy in England: what the DHSC takeover of NHS England means for patients and progress

By Henry Burkitt, Oxygen Strategy
7 June 2025

INnovation

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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

A new method of peptide synthesis may be the key to a greener future for pharma

By Shanzeh Mumtaz Ahmed, RARE Revolution
7 June 2025

“Our goal is to print a kidney in 24 hours”

By Julie Penfold, RARE Revolution
7 June 2025

IN motion

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Michael Wilbur: Finding industries’ voices in awareness campaigns, and is it time to drop the zebra?

By Michael Wilbur, MW Advocacy Solutions
14 July 2025

Gareth Baynam: From songlines to science – Bridging healthcare and Indigenous culture

By Emma Bishop, RARE Revolution
7 July 2025

Dr Kate Cameron on championing diversity in research sampling

By Nicola Miller, RARE Revolution
30 June 2025

Helene Cederroth: Solving the unsolvable – A revolutionary new model for diagnosing rare diseases

By Emma Bishop, RARE Revolution
23 June 2025

Women IN RARE

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Megan Maack of Childhood Dementia Initiative

By CONTRIBUTOR
14 July 2025

Jenny Ousbey of OVID Health

By CONTRIBUTOR
7 June 2025

Jenifer Ngo Waldrop of Rare Disease Diversity Coalition (RDDC)

By CONTRIBUTOR
5 June 2025

INcognito

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incognito: the secret life of a…research CEO

By CONTRIBUTOR
14 July 2025

incognito: the secret life of a…healthcare data CEO

By CONTRIBUTOR
30 June 2025

incognito: the secret life of a…healthcare communications CEO

By CONTRIBUTOR
7 June 2025

IN the thick of it

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Putting you in the heart of the rare community – CLOVES Syndrome Community

By CONTRIBUTOR
7 July 2025

Putting you in the heart of the rare community – National PKU Alliance

By CONTRIBUTOR
23 June 2025

Putting you in the heart of the rare community – Koolen-de Vries Syndrome Foundation

By CONTRIBUTOR
7 June 2025

INsights

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Do you have a confirmed diagnosis?

By Joe Rumney, RARE Revolution
14 July 2025

If you or your loved one has participated in a clinical trial, did the endpoints and success measures align with your greatest unmet needs? 

By Joe Rumney, RARE Revolution
7 July 2025

If you or your loved one has participated in a clinical trial, were you fully informed about the clinical endpoints and measures of success? 

By Joe Rumney, RARE Revolution
30 June 2025

If you or your loved one has participated in a clinical trial, what was your experience? 

By Joe Rumney, RARE Revolution
23 June 2025

IN the loop

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Health and humanity – why holistic care must be a shared industry responsibility

By CONTRIBUTOR
7 July 2025

IN the round

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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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AlphaRose Therapeutics on doing things differently

By Julie Penfold, RARE Revolution
23 June 2025
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