True Reply Pledges Up to $200,000 to HNF

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

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HNF "Voice of the Patient" Patient Weekend

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

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Recruiting Now: FLX-787 Phase 2 CMT Muscle Cramp Study

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Patient Care

Helpful resources for the treatment & management of CMT.

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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.

Patients

Medical Professionals

Research/Industry

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

Latest News From HNF

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.

Meet the 2018 TD Bank Five Boro Bike Tour Team CMT

Here’s a snapshot of the inspiring Team CMT riders and why they are participating in this year’s TD Bank Five Boro Bike Tour.

Events

An Evening for Charity

New York City ~ June 2nd, 2018

Join us on Saturday, June 2nd at 7:00pm at the BH Kitchen & Bar in New York City. The evening will be filled with dinner, drinks, music and fun activities. All proceeds will go towards the Therapeutic Research in Accelerated Discovery (TRIAD).

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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.

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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.

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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.

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