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Rare disease clinical research: it is time to tackle what matters most to patients

Supporting the development and evaluation of new treatments for rare diseases has become a key priority of the 21st century. Over 7,000 distinct rare diseases, affecting around 36 million people...

Video

Working with patient associations: What is the key to a positive interaction?

Patients insights Rare disease

https://www.youtube.com/watch?v=R65yKqxo4zQWhat rare disease patients and families want is a simpler life.Discover here what makes the relationship between the members of...

Video

How a patient association gave rise to a company

Patients insights Rare disease

A patient association in rare diseases is first and foremost families who all have one thing in common: they need...

Case study

Rare Disease case study

Rare disease

Over 90% of rare diseases have no treatment… There are more than 6,000 known rare diseases...Approximately 80% of them have a genetic...

Digitalization Trends in Tackling the Complexity of Clinical Trials for Patients with Multiple Health Conditions

Rare disease

Patients participating in clinical research face a whole range of challenges, and it is particularly worse for those living with...

Article

Partnering with patients to boost clinical research in rare diseases

Patients insights Rare disease

Although much progress has been made in developing scientific knowledge and conducting clinical research in rare diseases, serious challenges remain....

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About the author

Céline Hollinger

Celine brings almost two decades of communications experience in the life sciences. As a co-founder of a healthcare communication agency for over a decade, she has supported top pharma and innovative healthcare companies. Since April 2019, she has been leading marketing and communication at Kayentis with her innovative strategies.

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