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Rare Disease Day

This page shows the latest Rare Disease Day news and features for those working in and with pharma, biotech and healthcare.

No patient left behind

No patient left behind

How healthcare comms helps create rare disease communities. Natalie Lanyon. We’re told from a young age that individuality is to be celebrated; it’s good to stand out from the ... The patient’s perspective. With rare diseases, the patient often

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  • Case-study for thalassaemia: Dimitri Azzopardi Case-study for thalassaemia: Dimitri Azzopardi

    An in-depth look at beta thalassaemia for Rare Disease Day. Beta thalassaemia major is a serious, lifelong genetic blood disorder. ... You can find information about Rare Disease Day here and here, or via the Twitter activity.

  • Rare Diseases Day Rare Diseases Day

    On Rare Disease Day in 2019 it is surprising to note that few rare diseases have benefited from the digitisation of condition management and disease information in the same way as ... Yet, there is no cure for the majority of rare diseases and many go

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COVID-19 Updates and Daily News

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Nucleus Global

Nucleus Global is the largest specialist medical communications network in the world. Globally, we have over 700 experts delivering world-class...

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The big issue
Whether you want to lead or follow, you need to understand the elephant in the C-suite...
INFOGRAPHIC 02: The Importance of clinical study websites
Here’s a infographic of why clinical study websites are important to patient recruitment and retention strategies…...
Working with, Advocating for, and Empowering Patients
A holistic view of how to work with patients virtually...