CATEGORIES: CMT Update | GRIN Patient Registry | Research and Critical Trials | TRIAD

Hot off the Press: CMT Update

by Courtney | Feb 23, 2023 | 0 comments

As we start the new year energized and ready to continue our mission of bringing treatments and cures for CMT, we have rebranded our CMT Update newsletter to feature our lead research programs including the GRIN patient registry, the HNF-funded research milestones that have been met, and how patients can continue to participate in the process. The CMT Update will continue to be published quarterly.

Winter 2023 CMT Update

HNF is Reshaping Drug Repurposing for CMT
Pharnext Unveils the Latest Progress
Is this Symptom Related to CMT?
Join the Global Registry for Inherited Neuropathies
CMT Genie and more…

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CMT Research Update: Pediatric Ankle And Gait Function

by Courtney | May 17, 2023 | GRIN Patient Registry, Pediatrics & CMT, Research and Critical Trials | 0 Comments

HNF TRIAD Academic Partner Connecticut Children’s Publishes Results of CMT Pediatric Natural...

Cambridge-led natural history study identifies MTRFR/C12orf65 deficiency to improve diagnosis and therapy development

by Courtney | Apr 17, 2023 | CMT Type - MTRFR-C12orf65, Faces of CMT - Jaxson, Faces of CMT - Zach, University of Cambridge | 0 Comments

This research will potentially show a method that may be quicker and better at identifying...

Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research

by Courtney | Apr 12, 2023 | GRIN Patient Registry, Registry, Research, Research and Critical Trials | 0 Comments

Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for...

CMT Highlight Reel: How does CMT data drive research using GRIN?

by Courtney | Mar 15, 2023 | GRIN Patient Registry, Research and Critical Trials, Webinars - Research and Clinical Trials | 1 Comment

Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!

Interested in driving CMT research forward? We need you!

by Courtney | Mar 8, 2023 | GRIN Patient Registry, Registry, Research and Critical Trials | 3 Comments

Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!

The Houliares Family Takes on CMT6

by Courtney | Mar 6, 2023 | CMT Update, Faces of CMT - Zach | 0 Comments

We have two choices in this world. We can sit back and do nothing, allowing this disease to happen, or we can go out and fight to make a difference.

Pharnext unveils the latest progress of the PREMIER Phase III clinical trial for CMT1A

by Courtney | Mar 6, 2023 | CMT Type - CMT1A, Pharnext, TRIAD - Therapeutics | 0 Comments

The PREMIER trial, initiated in March 2021, is an international, randomized, double-blind, two-arm...

HNF is Reshaping Drug Repurposing for CMT

by Courtney | Mar 6, 2023 | GRIN Patient Registry, Rarebase, Registry, Research and Critical Trials, TRIAD, Webinars - Research and Clinical Trials | 0 Comments

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

by Courtney | Mar 3, 2023 | CMT-Connect Webinars, Featured, GRIN Patient Registry, Registry, Research and Critical Trials, Webinars - FEATURED, Webinars - Research and Clinical Trials | 0 Comments

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

by Courtney | Feb 23, 2023 | Cannabis, GRIN Patient Registry, Patient-Focused Research, Registry | 1 Comment

Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease - Patient Reported...

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Hot off the Press: CMT Update

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