6,000+ Strong Across 72 Countries — 2025 GRIN is Changing the Game for CMT Research!
We’re thrilled to announce a major milestone:
Over 6,000 GRIN members from 72 countries have joined forces to advance research for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN)—and the momentum is only growing!
Welcome to the Hereditary Neuropathy Foundation (HNF)—we’re so glad you’re here. Since 2001, HNF has been committed to improving the lives of those living with CMT through research, awareness, and advocacy. One of our most impactful initiatives? The Global Registry for Inherited Neuropathies (GRIN).
What Is GRIN?
GRIN is the only global patient registry collecting patient-reported data alongside genetic reports, medical records, and more.
It’s not just a database—it’s a bridge between your experience and groundbreaking research.
And now, you can be part of something even bigger.
Join the GRIN Natural History Study!
One of the most critical surveys now available in GRIN is the Natural History Study. This in-depth study collects essential info about:
- Your genetic mutation (genotype)
- How your CMT symptoms present (phenotype)
- How CMT affects your quality of life (QoL)
This information is a game-changer—it helps scientists understand disease patterns and design better, more targeted clinical trials.
The study includes about 60 questions and takes around 30 minutes to complete.
Join GRIN and contribute to the future of CMT research
CMT Surveys That Matter!
There are new surveys waiting in your GRIN profile right now—each one is designed to help researchers understand the full picture of life with CMT. Completing them takes minutes, but the impact lasts for years.
Current surveys include:
- Natural History Study (NEW!)
- CMT & Cannabis
- Gastrointestinal Symptoms
- Lifestyle
- Medication Usage
- Mental Outlook
- Health & Development
- ONLS (Overall Neuropathy Limitations Scale)
- AFO Footwear Experience Survey
Haven’t logged in lately? Now’s the time to check for updates and complete any open surveys.
Why Should You Join or Update GRIN?
- Help accelerate drug development and gene therapy research
- Get notified when you may be eligible for clinical trials
- Provide data that leads to real change in diagnosis and treatment
- Support a patient-driven movement to understand every CMT subtype
GRIN is safe, secure, and confidential. Your information is de-identified and shared only with approved researchers and partners working to improve lives.
The Power of Patient Voices
Your experience is more than a story—it’s data that drives discovery. GRIN makes your voice heard where it matters most: in labs, in trials, and in conversations with regulators and companies developing tomorrow’s treatments.
Whether you’re brand new to GRIN or a longtime member, your participation keeps the momentum going. Complete your profile. Finish your surveys. Stay involved.
Ready to Make an Impact?
Haven’t joined GRIN yet? Sign up here
Already a member? Log in, update your profile, and check for new surveys!
Together, we’re not just tracking CMT—we’re transforming its future.
Let’s keep growing. Let’s keep GRINning. And let’s get to a cure—faster, together.
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