Those caring for patients living with CMT are invaluable members of our community. Caregivers are on the frontlines every day, helping patients manage their daily struggles and challenges of living with CMT.
Author Archive
Courtney
The purpose of the HNF Patient-Centered Charcot-Marie-Tooth Summit
The purpose of the summit summit and the value of the PCORI award in making the summit a ‘game changer’ for Charcot-Marie-Tooth research.
Applying for Disability with Hereditary Neuropathy or CMT
Learn how you can apply for disability with Hereditary Neuropathy or CMT.
Top Ten Ways Participating in GRIN Helps Support CMT/IN Research
HNF’s Global Registry for Inherited Neuropathies (GRIN) is one of our initiatives that supports our commitment and dedication to developing treatments and discovering cures for CMT and other INs.
Local Caped Crusaders Lead 2nd Annual Super Hero 5K For Autosomal Dominant Optic Atrophy
On Saturday, April 23, 2016, local caped crusaders joined Jillian for the 2nd Annual Super Hero 5K to help find a cure for Autosomal Dominant Optic Atrophy (ADOA). Over 200 people joined in on the fun of walking or running for a great cause.
A Night To Remember: First Casino Night Event For CMT6
On Thursday April 21, 2016, over 160 Zach supporters gathered for the 1st Casino Night to benefit CMT6!
Lung function and breathing issues with Charcot-Marie-Tooth
HNF wants to help our Inspire members get answers to questions related to Charcot-Marie-Tooth.
Radio interview with Jenny Decker
Radio interview from last week with Jenny Decker about how she is kayaking around the Big Island to raise awareness and funds for a Charcot-Marie-Tooth.
HNF’s New Accomplishments!
10 REASONS TO DONATE TO ALLISON MOORE’S 2016 BIKE RIDE CHALLENGE
Thursday, October 6, 2016: HNF Patient Centered Research Outcomes Summit
The Hereditary Neuropathy Foundation is proud and honored to conduct the first year Patient-Centered Research Outcomes Summit (PCROS) at 3 West Club in New York City on October 6, 2016
Pharnext Opens First U.S. Study Site For Its PLEO-CMT International Pivotal Phase 3 Trial In Charcot-Marie-Tooth Disease Type 1A
French pharmaceutical company Pharnext announced the opening of the first U.S. trial site for its PLEO-CMT pivotal Phase 3 clinical trial of its lead pleodrug PXT-3003 in Charcot-Marie-Tooth Disease Type 1A (CMT1A).
HNF 1 Of 20 Rare Disease Groups Selected To Develop Natural History Studies By NORD
The Hereditary Neuropathy Foundation is proud to be included among leading rare disease groups, as we collectively aim to fill the research gaps to better understand how these rare diseases progress over time.
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Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
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Webinars – Genetic Testing (1)
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Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
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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 (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (78)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (21)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
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Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
TRIAD – Clinical Trial Readiness (5)
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 (4)
Applied Therapeutics (10)
Pharnext (10)
Rarebase (4)
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CMT Type – CMT1A (22)
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CMT Type – CMT1X (3)
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CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (9)
Upcoming Events (3)
Ways to Give (4)
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