IN the know

IN the know

Employing advanced analytics and artificial intelligence in rare-disease pharmacovigilance

By Lucy Fulford-Smith, TMC

22 September 2025

IN the know

Looking ahead: the future for rare disease research and treatment

By Julie Penfold, RARE Revolution

22 September 2025

IN the know

Do you understand what is meant by co-design in the context of advocacy and industry partnerships?

By Joe Rumney, RARE Revolution

22 September 2025

IN the know

Progress in delivering rare therapies

By Julie Penfold, RARE Revolution

15 September 2025

IN the know

The limits of traditional pharmacovigilance in rare diseases

By Lucy Fulford-Smith, TMC

15 September 2025

IN the know

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

IN the know

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

By Emma Bishop, RARE Revolution

8 September 2025

IN the know

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

IN the know

The future of life sciences is out there

By Michael Wilbur, MW Advocacy Solutions

1 September 2025

IN the know

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

By Julie Penfold, RARE Revolution

1 September 2025

IN the know

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

IN the know

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 know

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 know

Breaking the cycle: rebuilding trust in medical research and delivery

By Nicola Miller, RARE Revolution

18 August 2025

IN the know

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

By Amy Gaviglio, Connetics Consulting

18 August 2025

IN the know

Have you experienced push back from professionals regarding either confirming or accepting your diagnosis?

By Joe Rumney, RARE Revolution

18 August 2025

IN the know

When policy fails people: Reimagining medicines access for rare conditions

By Henry Burkitt, Oxygen Strategy

11 August 2025

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