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Blog Archive
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New Collaboration with the University of North Carolina at Chapel Hill and The Jackson Laboratory Addresses Charcot-MarieTooth/Inherited Neuropathy Mutations Using Gene Therapy
HNF’s initial gene therapy work will focus on CMT type 6, which is caused by a recessive mutation in the C12orf65 gene and is currently no treatment.
Rare Neurological Disease Special Report Features CMT and HNF!
ust released, the third annual Rare Neurological Disease Special Report has CMT taking a front-row position with several articles discussing the latest developments in CMT treatments and improving CMT care.
January 27, 2017 – Bridge/Brunch Fundraiser
Charity Card Party Brunch and Boutique
Please join us January 27, 2017 at 10:00 at the Broken Sound Country Club, Boca Raton Florida. Join us for an exquisite brunch and card party to benefit the H.E.L.P fund/HNF at Broken Sound Country Club in Boca Raton, FL.
Scavenger Hunt Victor, New York: September 9, 2017
Scavenger hunt September 9th, 2017
Summit Panelist Spotlight: Team CMT Founder Chris Wodke
The Hereditary Neuropathy Foundation’s Team CMT Founder and Manager Chris Wodke is changing the face of Charcot-Marie-Tooth one mile at a time. Chris is an accomplished triathlete, marathon runner, and cyclist.
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
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.
Calling All Cyclists… Enjoy NY Sights While Riding to Cure CMT!
Hereditary Neuropathy Foundation (HNF) is excited to participate for the fourth consecutive year in the TD Bank Five Boro Bike Tour. It’s an honor says Allison Moore, Founder/CEO of HNF to once again be chosen as a charity partner in one of the biggest events in New York and the largest cycling event in America.
Taking Matters Into Your Own Hands
Do you have a rare form of CMT?
We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:
Accelerating Patient Access to Investigational Drugs in 2015
Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.
Wednesday, September 17th 7-8:30pm EST for a “Rare Neuropathies” Facebook Chat
FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help”
WHEN: September 17, 2014 (7-8:30 p.m. EST)
WHERE: www.facebook.com/NeuropathyAssociation
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CMT Summit (50)
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Webinars – Dating and Relationships (3)
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Webinars – Genetic Testing (1)
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Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (4)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars – UPCOMING (1)
Webinars- Emotional and Mental Health (5)
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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