Congratulations to GRIN Advisory Board member, Professor Joshua Burns, for being recognized by the Australian Academy of Health and Medical Sciences for his outstanding contributions to medical and health sciences.
Blog Category
Registry
Total posts in Category: 11
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).
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...
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 Awarded 2023 Health Equity in RARE Impact Grant
HNF Awarded 2023 Health Equity in RARE Impact Grant For Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit. The Hereditary Neuropathy Foundation is thrilled to announce that we are a recipient of the Global Genes Health Equity in RARE Impact Grant!
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports Since the launch of HNF’s...
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for...
Interested in driving CMT research forward? We need you!
Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!
HNF is Reshaping Drug Repurposing for CMT
HNF has partnered with Rarebase, a public benefit precision medicine company that has screened a large library of FDA approved small molecules to identify candidates for various types of CMT. Their tech-enabled drug discovery platform is called Function™. There are many published discoveries on the genetic cause of many types of CMT, including an understanding of the basic mechanism of disease and potential targets for FDA-approved drug repurposing. It is this understanding that allows HNF and Rarebase to target the genetic root cause of CMT.
Webinar: Making Sense & Science of CMT Symptoms
How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease - Patient Reported...
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Advocacy (7)
Awareness (32)
Centers of Excellence (13)
CMT en Español (1)
CMT Summit (50)
CMT Update (73)
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Awareness (32)
Centers of Excellence (13)
CMT en Español (1)
CMT Summit (50)
CMT Update (73)
CMT-Connect (30)
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)
Webinars – FEATURED (7)
Webinars – Genetic Testing (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
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- 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 (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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