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Author Archive
Courtney
Pediatric CMT Natural History Study Enrollment Opening at Two Centers of Excellence
Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).
CMT Awareness Month 2023 Hope. Courage. Action.
This year, HNF is spotlighting 3 Key Pillars vital to CMT Awareness & Research success.
We invite you to choose from each pillar throughout this September to drive Impact That Matters!
CMT Presents: Cohost a CMT Presentation with HNF!
HNF is proud to present “CMT Presents,” a virtual presentation series designed to spread awareness in the communities, companies, and groups closest to you!
First Ever Biorepository For Charcot-Marie-Tooth, HNF Launches The CMT Biobank
The Hereditary Neuropathy Foundation (HNF), an advocacy and research 501c3 non-profit, today...
DTx Pharma Receives FDA Orphan Drug Designation for DTx-1252 for the Treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A)
Dtx today announced that the FDA has granted Orphan Drug Designation to DTx-1252, an investigational FALCON small interfering RNA (siRNA) therapeutic for the treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A).
Great News From HNF TRIAD Industry Partner — Pharnext
Pharnext announces new positive results from the ongoing open-label extension study of their drug PXT3003
Great News From HNF TRIAD Industry Partner — Applied Therapeutics
Applied Therapeutics, Inc. has announced that their drug candidate, AT-007 (Govorestat), has received orphan medicinal product designation
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease — Patient Reported Outcomes
Data regarding medical cannabis use for pain relief in CMT from HNF’s CMT Patient Registry, GRIN
9 Key Findings from Your GRIN Surveys (and why you need to come back and complete more)
The study highlights the significant impact of neuropathic pain on the quality of life and psychosocial well-being of individuals with CMT.
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports
Over 200 individuals have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive diagnosis, many others have received their results as a variant of uncertain significance (VUS)
HNF sheds Light & Research Funding on Mitochondrial Diseases Linked to CMT
Mitochondria are the powerhouses of our cells. Think of them as our body’s batteries. Mitochondrial disease causes these batteries to run low.
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CMT Summit (50)
CMT Update (73)
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CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
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Webinars – Genetic Testing (1)
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Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
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Webinars – Surgery (2)
Webinars – Telemedicine (1)
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Community (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (22)
GRIN Patient Registry (30)
HNF Team (10)
Industry (2)
Living with CMT (75)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (15)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (7)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (9)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (20)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (7)
Registry (10)
Research (83)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (23)
TRIAD – Clinical Trial Readiness (1)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (3)
Applied Therapeutics (8)
Pharnext (10)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (19)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (6)
Upcoming Events (2)
Ways to Give (4)
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