The HNF 2018 Patient-Centered Behavioral Health Summit was one-of-kind: HNF launched a new curriculum.
HNF successfully executed the Externally-led PFDD Meeting for the FDA on September 28th, 2018.
Voice of the Patient Weekend: Expanding the Science of Patient Input in Drug Development and Tapping into Personal Potential
The time for our community to shine is coming as we prepare for the Patient-Focused Drug-Development Meeting on September 28, 2018!
On May 19, HNF participated in the Rare Patient Advocacy Symposium in partnership with Penn Medicine Orphan Disease Center and Global Genes.
I am attending HNF’s “Voice of the Patient” Weekend 2018 to tell the FDA and other stakeholders how TRPV4 HN impacts my life.
Meet Lainie Ishbia who will be speaking during the Voice of the Patient Weekend about behavioral health & CMT.
PFDD meetings integrate patient insights into the drug development process.
HNF has invited Kerin Reilly, who sits on our Board of Directors, to join us on the panel discussion “The Fearless Caregiver: The Caregiver’s Voice Matters and the Role of the Caregiver in Patient-Driven Research.”
The Hereditary Neuropathy Foundation is currently seeking 10 second video clips of CMT patients under the age of 16, performing daily activities.
Bracing is used in the management Charcot-Marie-Tooth to support and hold a part of the body compromised by muscle weakness, muscular atrophy, sensory impairment. Bracing is also used to help correct skeletal deformity.
Dr. Arnold is currently President & CEO, Arnold Consultancy & Technology LLC, eadquartered in New York City, and Practice Lead, HEOR, Quorum Consulting, Inc., based in San Francisco, CA
With respect to CMT, Dr. Baker’s team has collaborated with Drs. Michael Sereda and Klaus Nave of the Max Planck Institute for Experimental Medicine (MPI) to utilize their CMT1A transgenic rat and established the initial CMT1A rat colony in the United States.