A Letter From HNF's CEO/Founder
December 10, 2018
2018 was a pivotal year for the Hereditary Neuropathy Foundation (HNF) and the entire Charcot-MarieTooth (CMT) Community.
News & Stories
The latest from HNF: research updates, patient stories, advocacy wins, events, and CMT community news.
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HNF Partners with True Reply, the Future of Data Collection: Voice Activated Technology (VAT)
December 8, 2018
True Reply's Voice Activated Technology is an accessible and innovative new platform that captures the patient’s experience with CMT in their own words.
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The Externally-led Patient-Focused Drug Development (PFDD) Meeting Was A Huge Success!
December 5, 2018
HNF successfully executed the Externally-led PFDD Meeting for the FDA on September 28th, 2018.
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HNF Announces The First Pediatric Centers of Excellence for CMT
October 22, 2018
There are those situations in life where you are destined to meet and for me, meeting Dr. Jahannaz Dastgir, “Naz for short”, was one of them.
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HNF to Host Educational CMT Symposium at AANEM Annual Conference
October 8, 2018
HNF to host an educational CMT symposium at AANEM's Annual Conference October 10-13th in Washington, D.C.
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HNF Presents at RARE Patient Advocacy Summit Hosted by Global Genes®
October 1, 2018
The Annual RARE Patient Advocacy Summit, hosted by Global Genes, is in its seventh year and will take place on October 3-4 at the Hotel Irvine in Irvine, California.
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Voice of the Patient Weekend: Expanding the Science of Patient Input in Drug Development and Tapping into Personal Potential
September 25, 2018
The time for our community to shine is coming as we prepare for the Patient-Focused Drug-Development Meeting on September 28, 2018!
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CMT6 (c12orf65) “One gene, two diseases”
September 10, 2018
C12orf65 can present as two different types of diseases called CMT6 and Leigh’s Syndrome. Both diseases are caused by dysfunction of mitochondria, the energy factory of our cells, and are progressive and, many times, devastating.
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Jamal Hill ~ Paralympic Swimmer
August 11, 2018
We spoke with Paralympic swimmer, Jamal Hill about how he got started swimming, what it takes to make it to the Paralympics, his CMT journey and much more!
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HNF Joins Chronic Pain Advocacy Groups To Protect Access To Pain Medications
January 25, 2018
HNF proudly stands with the chronic pain community in protecting access to therapies and treatments.
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Pharnext’s lead PLEODRUG © for treatment of CMT1
November 9, 2017
Pharnext completed patient enrollment for the international Phase 3 clinical trial of PXT3003, Pharnext’s lead PLEODRUG ©, for treatment of CMT1A.
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Amazing Opportunity: AntiGravity Exercise Study in New York City!
July 31, 2017
Join this exclusive research study for people with CMT featuring the AlterG anti-gravity treadmill.
