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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...

Article

Direct insights from cancer patients: How they help us understand disease burden and the need for an individualized approach

Oncology Patients insights

Cultural differences and individual preferences have a significant impact on healthcare and clinical trial experience. Solutions exist in attempt to...

Working in collaboration with patient associations: insights from Estelle Haenel, Kayentis Medical Director

Patients insights

Whilst we hear a lot about working in collaboration with patient representatives, not so many industrial stakeholders are actually doing...

Infographic

Patients as partners in clinical trials – Survey results

Patients insights

We collaborate with patients to characterize their clinical trials expectations and better understand their readiness for remote clinical trials.This 11-question...

White Paper

Do we have the right understanding of how patients perceive digital clinical trials?

Patients insights

Interview with Trishna Bharadia, Health Advocate & Patient Engagement Advisor on the 1,133 patients survey results conducted by Kayentis in...

Do we really know what clinical trial patients need?

Patients insights

Let’s challenge our beliefs: Do we really know what clinical trial patients need? Do we have the right understanding of...

Infographic

Let’s listen to what patients have to tell us!

Patients insights

Because of the pandemic, have you felt... …anxious for your/your family’s health? …worried for your job? …isolated or lonely during...

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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Rare disease clinical research: it is time to tackle what...

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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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