CATEGORIES: Featured | Newly Diagnosed

CMT Awareness Month 2023 Hope. Courage. Action.

by Courtney | Aug 30, 2023 | 0 comments

CMT Awareness Month 2023

Hope. Courage. Action.

This year, HNF is spotlighting 3 Key Pillars vital to CMT Awareness & Research success.

We invite you to choose from each pillar throughout this September to drive Impact That Matters!

1. Hope

Learn about our exciting, new CMT TRIAD research projects & emerging technologies.
View HNF webinars and patient resources for support across many topics.
Connect with others living with CMT! Register for our first virtual CMT Meet-Up hosted by Julie Stone. Register here.

Action

Book a CMT Genie call to learn more about genetic testing options for CMT.
Share CMT Awareness with HNF’s FB profile photo frame.
Co-Host a CMT Presents event at your company or organization.

Courage

Prepare for CMT Clinical Trials by joining GRIN and/or completing new surveys.
Book a Team CMT call to brainstorm fundraising event ideas with us.
Donate to CMT Research and support Impact That Matters.

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3 Reasons to Join the Global Registry for Inherited Neuropathies – GRIN!

by Estela Lugo | Jan 18, 2021 | GRIN Patient Registry, Newly Diagnosed, Research, TRIAD | 0 Comments

What GRIN is and why you should join

Department of Neurology at UCLA

by Estela Lugo | Oct 26, 2020 | Centers of Excellence, Featured | 2 Comments

Interview of Dr. Anasheh Halabi

GRIN powers HNF’s patient-centered research and drug discovery initiatives.

by Estela Lugo | Apr 15, 2020 | Featured, GRIN Patient Registry, Research, TRIAD | 2 Comments

GRIN has played a critical role in identifying important issues related to the CMT patient experience, revealing new areas to explore and research.

HNF Presents Research Findings at Three Prestigious Conferences

by Courtney | Nov 5, 2019 | Featured, GRIN Patient Registry, Research | 6 Comments

Read more about the research findings presented at these conferences.

Inspire Community

by Courtney | Oct 11, 2018 | Inspire Community, Newly Diagnosed, Webinars - Inspire Community | 0 Comments

The INSPIRE App is live, and we’re sharing a behind-the-scenes look at how it works to improve the CMT Community!

10 Reasons To Join The Inspire CMT Community

by Courtney | Feb 5, 2018 | Inspire Community, Newly Diagnosed | 1 Comment

10 Reasons To Join The Inspire CMT Community Today!

Are You a Patient With CMT 1A? New Clinical Trial Opportunity Available For You!

by Courtney | Oct 31, 2016 | Clinical Trials, Featured | 9 Comments

For the first time investigators are looking for patients to participate in a pivotal Phase 3 clinical trial of Pharnext’s lead investigational pleodrug, PXT-3003 for the potential treatment of Charcot-Marie-Tooth Disease Type 1A (CMT1A).

CMT and Exercise

by Courtney | Jun 20, 2016 | Featured, PT and Exercise | 6 Comments

HNF wants to help our Inspire members get answers to questions related to Charcot-Marie-Tooth.

Scientific Advisory Board Meeting

by Courtney | Mar 9, 2015 | CMT Update, Featured | 0 Comments

On the 7th of November we convened our scientific advisory board meeting at the HNF offices in NY. We have written a detailed review that has been published and captures all of the discussion and make this freely available to the scientific community.

Pharnext Announces Pleotherapy Proof of Concept in Charcot-Marie-Tooth Disease Type 1A

by Courtney | Dec 19, 2014 | CMT Type - CMT1A, Featured, Pharnext | 12 Comments

PARIS, December 18th, 2014 – Pharnext SAS today announced the proof of concept of its pleotherapy research and development approach based on a proprietary network pharmacology platform that identifies synergic combinations of drugs already approved for other diseases. Indeed, Pharnext’s lead pleodrug, PXT-3003, has shown positive results both in preclinical and Phase 2 clinical studies published today in the Orphanet Journal of Rare Diseases.

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GRIN PATIENT REGISTRY

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EMERGING TECHNOLOGIES

GENETIC TESTING - CMT GENIE

MOVEMENT IS MEDICINE™

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RESEARCH FUNDING

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CMT Awareness Month 2023 Hope. Courage. Action.

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