Help us to improve outcome measures, develop biomarkers and improve patient care by joining the Global Registry for Inherited Neuropathies
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GRIN Patient Registry
Total posts in Category: 31
10 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.
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.
Global Registry For Inherited Neuropathies: Your Questions Answered
Why are we asking you to join our registry? It’s simple. Without you, researchers won’t have the essential patient information to develop the drugs, gene therapy, and clinical trials for Charcot-Marie-Tooth and other inherited neuropathies.
This is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects the historical, clinical, and genetic information on patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these debilitating disorders. We understand there may be some hesitation joining our registry. To help mitigate any concerns, we’ve have the answers to your most common questions.
Global Registry For Inherited Neuropathies: The Quest For A Genetic Diagnosis
The Hereditary Neuropathy Foundation (HNF) and Hannah’s Hope Fund (HHF) have partnered together to create the Global Registry For Inherited Neuropathies (GRIN).
Global Registry for Inherited Neuropathy (GRIN) Vs the Rare Disease Clinical Research Network (RDCRN)
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
“Fighter Mom’s” Join Forces
Lori Sames and her husband Matt formed Hannah’s Hope Fund (HHF) following their youngest daughter’s diagnosis of Giant Axonal Neuropathy (GAN) in 2008. GAN is the most rare, and one of the most severe, forms of Inherited Neuropathy.
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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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