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.

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Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

HNF-WVU-NIOSH Study update:

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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?

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