The HNF 2018 Patient-Centered Behavioral Health Summit was one-of-kind: HNF launched a new curriculum.
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CMT Summit
Total posts in Category: 50
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!
Allison Moore Speaker at 2018 Rare Patient Advocacy Symposium
On May 19, HNF participated in the Rare Patient Advocacy Symposium in partnership with Penn Medicine Orphan Disease Center and Global Genes.
Why I’ll be attending the “Voice of the Patient Weekend” A Patient’s Perspective
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 Speaker – Behavioral Health & CMT
Meet Lainie Ishbia who will be speaking during the Voice of the Patient Weekend about behavioral health & CMT.
What Is An Externally-Led PFDD Meeting?
PFDD meetings integrate patient insights into the drug development process.
Overview of the Patient-Centered CMT/HNPP Pain Summit 2017
On November 3, 2017, nearly 100 participants gathered in Boston for HNF’s Patient-Centered CMT/HNPP Pain Summit.
We Care About Research for Hereditary Neuropathy with Liability to Pressure Palsies (HNPP)!
HNPP is the second most common form of CMT/IN and may affect approximately 15,000 in the USA. Help us find a cure today!
Hereditary Neuropathy Foundation Announces Patient-Centered CMT/HNPP Pain Summit
HNF is proud to announce that our annual CMT Summit will include the HNPP community Friday, November 3, 2017, in Cambridge, Massachusetts.
Summit Panelist Spotlight: Caregiver Kerin Reilly
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.”
CMT Kids Video
The Hereditary Neuropathy Foundation is currently seeking 10 second video clips of CMT patients under the age of 16, performing daily activities.
Summit Panelist Spotlight: Mitchell Warner
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.
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