Don’t wait, reserve your spot at the first Patient-Centered CMT Summit! There are only 40 spots left. Go to www.cmtsummit.org to reserve your spot now.
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.
On November 3, 2017, nearly 100 participants gathered in Boston for HNF’s Patient-Centered CMT/HNPP Pain Summit.
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!
HNF is proud to announce that our annual CMT Summit will include the HNPP community Friday, November 3, 2017, in Cambridge, Massachusetts.
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.
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