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IN the know

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When policy fails people: Reimagining medicines access for rare conditions

By Henry Burkitt, Oxygen Strategy
11 August 2025

The problem with the zebra: Why global awareness campaigns must be rooted in local leadership

By Michael Wilbur, MW Advocacy Solutions
21 July 2025

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

INnovation

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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

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

IN motion

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Sumair Nizamuddin: Rebuilding trust in medical research and delivery

By Nicola Miller, RARE Revolution
11 August 2025

Putting you in the heart of the rare community – CDKL5 UK

By CONTRIBUTOR
4 August 2025

One 2Treat: Revolutionising clinical trials

By Nicola Miller, RARE Revolution
28 July 2025

Tobias Hagedorn: Stretched thin

By Nicola Miller, RARE Revolution
21 July 2025

Women IN RARE

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Annie Kennedy of EveryLife Foundation for Rare Diseases

By CONTRIBUTOR
11 August 2025

Sophie Turner of Empowered By Us

By CONTRIBUTOR
28 July 2025

Megan Maack of Childhood Dementia Initiative

By CONTRIBUTOR
14 July 2025

Jenny Ousbey of OVID Health

By CONTRIBUTOR
7 June 2025

INcognito

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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

incognito: the secret life of a…healthcare data CEO

By CONTRIBUTOR
30 June 2025

IN the thick of it

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Putting you in the heart of the rare community – CDKL5 UK

By CONTRIBUTOR
4 August 2025

Putting you in the heart of the rare community – Dravet Syndrome Foundation

By CONTRIBUTOR
21 July 2025

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

INsights

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Did receiving your diagnosis allow you to connect with a relevant community for support?

By Joe Rumney, RARE Revolution
11 August 2025

Did receiving your diagnosis open access to support services (eg, social services, financial benefits, access to community or national services)?

By Joe Rumney, RARE Revolution
4 August 2025

Did receiving your diagnosis open access to treatment or therapies (either medicinal or non-medicinal interventions)?

By Joe Rumney, RARE Revolution
28 July 2025

Overall, has receiving a confirmed diagnosis had a positive or negative effect on your quality of life and how you live with an manage your health?

By Joe Rumney, RARE Revolution
21 July 2025

IN the loop

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Understanding the true cost of clinical trials

By CONTRIBUTOR
4 August 2025

Stretched thin

By Nicola Miller, RARE Revolution
28 July 2025

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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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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