How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
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GRIN Patient Registry
Total posts in Category: 31
Hot off the Press: CMT Update
As we start the new year energized and ready to continue our mission of bringing treatments and...
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease - Patient Reported...
Hereditary Neuropathy Foundation Launches New Website and Webinar to Support Charcot-Marie-Tooth Disease Research
HNF’s website provides CMT community, academia, and biotech industry a hub for exploring research, clinical trials, vital resources, and ways to get involved.
The Key Role CMT Patients Play in Research
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.
A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.
Natural History Study Assessment of CMT patients to Support Virtual Clinical Studies
The goal of the project is to evaluate years of collected patient-reported data and to correlate the findings to specific cohorts to include genotype, phenotype and clinical features.
3 Reasons to Join the Global Registry for Inherited Neuropathies – GRIN!
What GRIN is and why you should join
GRIN powers HNF’s patient-centered research and drug discovery initiatives.
GRIN has played a critical role in identifying important issues related to the CMT patient experience, revealing new areas to explore and research.
Digital Assessments of Balance and Gait in People with Charcot-Marie-Tooth Disease Study
HNF breaking ground with exciting gait study utilizing new digital technology – ProtoKinetics Zeno Walkway Gait Analysis System
HNF Presents Research Findings at Three Prestigious Conferences
Read more about the research findings presented at these conferences.
HNF Launches Online Clinical Study
HNF launches GRIN with 4 online clinical studies that are important as we continue with our therapy development pipelines.
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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 (31)
HNF Team (10)
Industry (3)
Living with CMT (75)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (2)
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 (22)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (7)
Registry (11)
Research (85)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (59)
The CMT Genie (3)
TRIAD (23)
TRIAD – Clinical Trial Readiness (2)
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 (1)
Ways to Give (4)
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