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New IN this week

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Putting you in the heart of the rare community – The CSNK2A1 Foundation

By CONTRIBUTOR
17 August 2026

How one founder is using machine learning to change the rare disease diagnostic journey

By Karen Roberts, RARE Revolution
17 August 2026

Orphan drugs: what is needed to break down barriers to development?

By Karen Roberts, RARE Revolution
10 August 2026

Introducing the Hugo Fellows: insights from the frontline of rare disease research

By Emma Bishop, RARE Revolution
10 August 2026

IN the know

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Orphan drugs: what is needed to break down barriers to development?

By Karen Roberts, RARE Revolution
10 August 2026

The Act for Ultra-Rare Coalition – growing momentum for an overlooked population

By Emma Bishop, RARE Revolution
13 July 2026

RARE Revolution poll results reveal Rare Disease Day campaigns helped reach more people

By Karen Roberts, RARE Revolution
6 July 2026

Who decides what your health is worth?

By Henry Burkitt, Oxygen Strategy
6 July 2026

INnovation

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How one founder is using machine learning to change the rare disease diagnostic journey

By Karen Roberts, RARE Revolution
17 August 2026

Introducing the Hugo Fellows: insights from the frontline of rare disease research

By Emma Bishop, RARE Revolution
10 August 2026

MND: research discovers signs of disease up to 20 years before onset

By Karen Roberts, RARE Revolution
3 August 2026

Hugo Fellows: securing the future of rare diagnostics

By Emma Bishop, RARE Revolution
3 August 2026

Women IN RARE

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Dr Martina Rodie, Consultant Neonatologist NHS Greater Glasgow & Clyde and chair of Scottish Government Rare Disease Implementation Board

By CONTRIBUTOR
20 July 2026

Charlene Son Rigby, chief executive officer, Global Genes

By CONTRIBUTOR
29 June 2026

Deborah O’Neil, chief executive officer, NovaBiotics Ltd

By CONTRIBUTOR
11 May 2026

Gemma Gapper, director, Policy & Patient Access UK & Ireland, BioCryst a Neopharmed Gentili company

By CONTRIBUTOR
27 April 2026

INcognito

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incognito: the secret life of a…charity CEO

By CONTRIBUTOR
29 June 2026

incognito: the secret life of a…rare disease parent and charity founder

By CONTRIBUTOR
16 February 2026

incognito: the secret life of an…independent patient engagement consultant to industry

By CONTRIBUTOR
2 February 2026

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

By CONTRIBUTOR
25 August 2025

IN the thick of it

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Putting you in the heart of the rare community – The CSNK2A1 Foundation

By CONTRIBUTOR
17 August 2026

Putting you in the heart of the rare community – Alpha-1 Europe Alliance

By CONTRIBUTOR
27 July 2026

Putting you in the heart of the rare community – The Sturge-Weber Foundation

By CONTRIBUTOR
6 July 2026

Putting you in the heart of the rare community – Wolfram Syndrome UK

By CONTRIBUTOR
15 June 2026

IN person

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Rare disease therapies framework: industry urged to contribute to MHRA consultation on plans for regulatory changes

By Julie Penfold, RARE Revolution
13 July 2026

Next steps for rare diseases in England: advancing research, innovation, trials and genomics

By Julie Penfold, RARE Revolution
22 June 2026

Drug repurposing: translating optimism into action for rare diseases

By Rebecca Stewart, RARE Revolution
15 June 2026

Next steps for rare diseases in England: progress of the Rare Therapies Launch Pad

By Julie Penfold, RARE Revolution
15 June 2026

IN the pipeline

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Releasing the brake: how an oral therapy could transform life with achondroplasia

By Nicola Miller, RARE Revolution
20 April 2026

Parent-led: the FOXG1 Research Foundation’s path from diagnosis to drug development

By Nicola Miller, RARE Revolution
30 March 2026

Rethinking cell therapy: CERo Therapeutics brings a new mechanism to AML

By Nicola Miller, RARE Revolution
23 March 2026

Turning point: FORTIFY phase 3 study for limb-girdle muscular dystrophy

By Nicola Miller, RARE Revolution
1 December 2025
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