2023 Winter CMT Update

Summit Speaker Spotlight: Gary Barg, The Fearless Caregiver

by Courtney | May 25, 2016 | CMT Summit, CMT Update | 1 Comment

Those caring for patients living with CMT are invaluable members of our community. Caregivers are on the frontlines every day, helping patients manage their daily struggles and challenges of living with CMT.

Applying for Disability with Hereditary Neuropathy or CMT

by Courtney | May 19, 2016 | CMT Update, Legal Rights and Benefits | 75 Comments

Learn how you can apply for disability with Hereditary Neuropathy or CMT.

Top Ten Ways Participating in GRIN Helps Support CMT/IN Research

by Courtney | May 19, 2016 | CMT Update, GRIN Patient Registry | 0 Comments

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.

Meet Molly: A True CMT Warrior

by Courtney | Apr 6, 2016 | Bike New York, CMT Update, Living with CMT, Team CMT Members | 2 Comments

Kassandra generously shared the story of their friendship with us: I met Molly while living abroad in Tel Aviv, Israel. She just moved there and reached out to me to write for a foodie website I was running at the time.

The Hereditary Neuropathy Foundation Announces New Partnership With Acetylon Pharmaceuticals To Explore Potential Therapies For Charcot-Marie-Tooth Disease

by Courtney | Apr 6, 2016 | CMT Update | 5 Comments

The Hereditary Neuropathy Foundation (HNF) is proud to announce a new partnership with Acetylon Pharmaceuticals, Inc., a leader in the development of selective histone deacetylase (HDAC) inhibitors for enhanced therapeutic outcomes.

Hot Topic In HNF’s Inspire Online Support And Discussion Community: Hearing Loss And Charcot-Marie-Tooth

by Courtney | Mar 23, 2016 | CMT Update | 6 Comments

Our shared stories help show a connection between CMT and the symptoms we experience, such as hearing loss.

Q&A on Genetic Testing with Stephanie Gandomi, M.S., LCGC, of Invitae

by Courtney | Mar 23, 2016 | CMT Update, Genetic Testing | 12 Comments

HNF gets answers to questions on what is genetic testing, cost, family history, what happens to the data.

H.E.L.P. Card Party CMT2A Fundraiser

by Courtney | Feb 10, 2016 | CMT Update, Faces of CMT - HELP Fund | 0 Comments

HNF is proud to report that over $36,000 was raised for research for CMT2A at this annual event!

Global Registry For Inherited Neuropathies: Your Questions Answered

by Courtney | Nov 12, 2015 | GRIN Patient Registry | 0 Comments

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

by Courtney | Sep 1, 2015 | GRIN Patient Registry | 13 Comments

The Hereditary Neuropathy Foundation (HNF) and Hannah’s Hope Fund (HHF) have partnered together to create the Global Registry For Inherited Neuropathies (GRIN).

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