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Posts tagged Rare Disease
Credible Science – How Can We Help Patients Find Good Information?

While attending a session about crowd-sourcing cures for rare disease, I was struck by the need for credible scientific information accessible by patients. But the conversation also raised questions for me about how we can get patients to trust science again and generate credible information from anecdotal patient experience. There has to be a better way for patients to get the information they need to thrive.

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