CATEGORIES: Research
rare cast

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

by | Nov 19, 2018 | 1 comment

Daniel Levine from Global Genes spoke with HNF’s CEO and Founder Allison Moore on this edition of Global Genes Rare Cast about how HNF used a technology company to gather patient information to present at the Patient-Focused Drug Development Meeting with the FDA.

CMT can impact the ability for patients to type or write. By joining forces with a technology company, HNF was able to gather patient feedback using voice technology, allowing patients to give their comments over the phone through a simple automated system.

Learn more on this topic

Related Blog Posts

2024 CMT Roadshow Coming to a City Near You?

2024 CMT Roadshow Coming to a City Near You?

Do you want to make a difference in CMT research? HNF is looking for patients with a confirmed CMT diagnosis to participate in the CMT Biobank

Join the conversation

Leave a Comment

1 Comment

  1. David Beckingham

    Love what you’re doing and your progress. I don’t know how, other than politically, to help get Pharnext approved in Canada. Obviously it is easier once a drug has FDA Approval. I have a son who could be in clinical trials. I had DNA Testing which confirmed I have CMT1A so we assume he does also. Will the drug be affordable in the US and Canada?

    Reply

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news