How One Rare Disease Organization Used Technology to Provide Greater Patient Insight to FDA


When the Hereditary Neuropathy Foundation set up a patient focused drug development meeting with the FDA, it knew that patients with Charcot-Marie-Tooth disease face difficulty providing written comments because of the impact of the disease on their ability to write or type. Working with a technology company, the organization was able to gather patient feedback using voice technology that allowed them to report comments over the phone through an automated system. We spoke to Allison Moore, CEO of the Hereditary Neuropathy Foundation, about the use of this technology, how it works, and why it may benefit patients with many other conditions.

Filed Under: Global Genes, Innovation, Patient Tools, People & Organizations, Rare Community, RARECast Podcasts

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