PFDD Meeting, September 28, 2018

by | Dec 19, 2020 | 0 comments

Your Voices Were HEARD


On Friday, September 28, 2018 HNF hosted an Externally-led Patient Focused Drug Development (PFDD) Meeting. In attendance were patients, caregivers, Government Officials, Healthcare Providers, Industry Representatives, and Payors. The PFDD meeting was an opportunity for patients and families to inform the FDA, drug developers and other key stakeholders, on the true burdens of living with CMT and how patients view the benefits and risks of treatments for CMT. This groundbreaking meeting included facilitated panel discussions designed to provide the FDA with perspectives from people with hereditary neuropathies, advocates and caregivers. The day focused primarily on a range of patient viewpoints on CMT, covering the symptoms and impacts to daily life that are most important to patients and patients’ perspectives on existing and future treatments.

We thank the countless individuals that participated in-person and the hundreds from the webcast.

Your Voices were HEARD.

Meeting Recap

Voice of the Patient Report Recap of PFDD Meeting, Sep 28, 2018

Meeting Program Book

Hereditary Neuropathy Foundation, September 28, 2018, Hyattsville, MD


View the Meeting by Session

Learn more on this topic

Related Blog Posts

Join the conversation

Leave a Comment


Submit a Comment

Your email address will not be published.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


Join for notifications on events, campaigns, & news