True Reply Pledges Up to $200,000 to HNF

Tech startup True Reply pledges up to $200,000 to HNF to support patient voices.

HNF "Voice of the Patient" Patient Weekend

Washington D.C. ~ September 28th & 29th, 2018

Patient Care

Helpful resources for the treatment & management of CMT.

TCS New York City Marathon

Sunday November 4th, 2018

 

TCS New York City Marathon

Welcome To The

Hereditary Neuropathy Foundation

Our mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families living with CMT, and fund research that will lead to treatments and cures.

Acceleron is actively enrolling Phase 2 clinical study of ACE-083 for CMT patients ~ Learn more.

Latest News From HNF

Meet Linda Crabtree: Author of “CMT and Me”

An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease.

Global Genes To Host The 2018 RARE Patient Advocacy Symposium

Global Genes, in partnership with the University of Pennsylvania School of Medicine Orphan Disease Center, will host the 2018 RARE Patient Advocacy Symposium in Philadelphia on May 19th, 2018.

HNF’s Landmark Externally-Led Patient-Focused Drug Development Meeting

HNF will be holding a landmark externally-led Patient-Focused Drug Development Meeting for CMT and INs in Washington, D.C. on Friday, September 28, 2018.

Neurology Reviews® & NORD Publish 2018 Rare Neurological Disease Special Report

The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD.

CMT Careers: No Piece Of Cake

Sometimes physical challenges can dictate job and career paths.

Events

Grace's Courage Crusade’s Summer Celebration

Grace's Courage Crusade’s Summer Celebration

Charlestown Rathskeller Tavern ~ July 21st, 2018

Join us for Grace’s Courage Crusade’s Summer Celebration hosted by the Caldarone/Sidoti Family on Saturday, July 21, 2018 from 4:00pm – 8:00pm at Charlestown Rathskeller Tavern to fund research for CMT Type 2.

Join Us!

HNF "Voice of the Patient" Patient Weekend

HNF "Voice of the Patient" Patient Weekend

Washington, D.C. ~ September 28th & 29th, 2018

HNF will be hosting two ground-breaking patient-centered  meetings to capture the “Voice of the Patient” so we can improve and implement protocols, treatments and the development of new therapeutics to meet our Charcot-Marie-Tooth (CMT) patients’ needs.

Join Us!

TCS New York City Marathon

TCS New York City Marathon

New York City ~ November 4th, 2018

HNF is participating as a charity partner for the 2018 TCS New York City Marathon on Sunday, November 4th, 2018.

Join Us!