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

Patients insightsRare disease
Last updated: April 13, 2026

What rare disease patients and families want is a simpler life. 
Discover here what makes the relationship between the members of the patients’ association and a company work so well.

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About the author
Picture of Marc Chaperon

Marc Chaperon

Estelle brings 20+ years of experience in pre-clinical and clinical research from Top 5 Pharma and Biotech firms. Leading projects across Phases 1 to 4 in diverse therapeutic areas, she offers deep insights into clinical science, operations, and regulatory intricacies. Appointed as Chief Medical Officer at Kayentis in May 2019.
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Kayentis and RWS join forces to improve data confidence in neuroscience clinical trials
Combining best-in-class eCOA technology with expert rater training to reduce variability and strengthen clinical outcomes data in CNS and other complex disorder clinical trials.
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