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IN the know

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The limits of traditional pharmacovigilance in rare diseases

By Lucy Fulford-Smith, TMC
15 September 2025

The future of life sciences is out there

By Michael Wilbur, MW Advocacy Solutions
1 September 2025

No true north: The disbanding of ACHDNC and its impact on rare disease innovation

By Amy Gaviglio, Connetics Consulting
18 August 2025

When policy fails people: Reimagining medicines access for rare conditions

By Henry Burkitt, Oxygen Strategy
11 August 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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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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Nisha Venugopal of Indo US Organization for Rare Diseases

By CONTRIBUTOR
8 September 2025

Virginie Bros-Facer of EURORDIS – Rare Diseases Europe

By CONTRIBUTOR
25 August 2025

Annie Kennedy of EveryLife Foundation for Rare Diseases

By CONTRIBUTOR
11 August 2025

Sophie Turner of Empowered By Us

By CONTRIBUTOR
28 July 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 – National Scleroderma Foundation

By CONTRIBUTOR
15 September 2025

Putting you in the heart of the rare community – International Niemann-Pick Disease Registry (INPDR)

By CONTRIBUTOR
1 September 2025

Putting you in the heart of the rare community – Sjögren’s UK

By CONTRIBUTOR
18 August 2025

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

By CONTRIBUTOR
4 August 2025

INsights

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Is your organisation paid fair market value when engaging with pharma/industry activities such as patient engagement and recruitment collaborations, or insights work?

By Joe Rumney, RARE Revolution
15 September 2025

Do you feel that there is a perception within your community that partnering with pharma/industry impacts your organisation’s independence and autonomy?

By Joe Rumney, RARE Revolution
8 September 2025

When considering grant funding for your charitable organisation, what type of funding is the most beneficial to your organisation?

By Joe Rumney, RARE Revolution
1 September 2025

When entering into a master service agreement (MSA) with a pharma/industry partner how did your charitable organisation find the process?

By Joe Rumney, RARE Revolution
25 August 2025

IN the loop

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Progress in delivering rare therapies

By Julie Penfold, RARE Revolution
15 September 2025

A global vision for rare disease: Inside the ground-breaking RDI-Lancet Commission on Rare Diseases

By Emma Bishop, RARE Revolution
8 September 2025

Four years of the UK’s Rare Diseases Framework – what progress has been made?

By Julie Penfold, RARE Revolution
1 September 2025

The trust–success ratio: Why building trust is the cornerstone of PPIE (Public Patient Participation Inclusive and Engagement) – A patient’s perspective

By CONTRIBUTOR
25 August 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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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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