IN the know

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

IN the know

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

By Joe Rumney, RARE Revolution

11 August 2025

IN the know

Understanding the true cost of clinical trials

By CONTRIBUTOR

4 August 2025

IN the know

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

IN the know

Stretched thin

By Nicola Miller, RARE Revolution

28 July 2025

IN the know

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

By Joe Rumney, RARE Revolution

28 July 2025

IN the know

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 know

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

By Michael Wilbur, MW Advocacy Solutions

21 July 2025

IN the know

Do you have a confirmed diagnosis?

By Joe Rumney, RARE Revolution

14 July 2025

IN the know

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

IN the know

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

By CONTRIBUTOR

7 July 2025

IN the know

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

By Michael Wilbur, MW Advocacy Solutions

30 June 2025

IN the know

Solving the unsolvable: a revolutionary new model for diagnosing rare diseases

By Emma Bishop, RARE Revolution

30 June 2025

IN the know

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

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