The Global Registry for Inherited Neuropathies (GRIN) powers the Hereditary Neuropathy Foundation’s patient-centered research and drug discovery initiatives. Leading Charcot-Marie-Tooth advocacy organization’s innovative platform plays a critical role in its mission.
GRIN has played a critical role in identifying important issues related to the CMT patient experience, revealing new areas to explore and research.
$61,000 Raised to Support Pediatric CMT Trials
Last summer HNF teamed up with the Penn Medicine Orphan Disease Center (ODC) for the Million Dollar Bike Ride (MDBR) in Philadelphia. Our fundraising goal of over $30k was achieved and matched by the ODC, granting HNF over $60k to allocate to CMT research. Thanks to...
Pharnext Announces PXT3003 for the Treatment of Charcot-Marie-Tooth Disease Type 1A has Been Granted Promising Innovative Medicine (PIM) Designation by UK Medicines and Healthcare Products Regulatory Agency
PARIS, France, 8:30 a.m., March 18, 2020 (CET) – Pharnext SA (FR0011191287 – ALPHA), a biopharmaceutical company pioneering a new approach to developing innovative drug combinations based on big genomics data and artificial intelligence, today announced that the...
Pharnext raises € 7.7 million in a private placement
PARIS, France, 08:30 a.m., March 05, 2020 (CET) – Pharnext SA (FR0011191287 – ALPHA) (the “Company”), a biopharmaceutical company pioneering a new approach to developing innovative drug combinations based on its PLEOTHERAPY artificial intelligence platform...
HNF on the Forefront of Pain Research to Support CMT Patients
Allison Moore, HNF Founder/CEO, along with her team, took action and led the HNF groundbreaking CMT pain initiative to help the community.
Potential Novel Treatment for a Rare Form of Charcot-Marie-Tooth (CMT) Neuropathy
In 1998 Dr. Florian Thomas met a five-generation family with hereditary neuropathy leading to a research effort now entering its third decade.
CMT&ME APP Adds New Medical Profile
The CMT&ME app has updated the research app to include a brand new medical profile.
HNF tackles the hidden mysteries behind the genetic diagnosis of CMT mitochondrial diseases
C12orf65 gene, a rare form of CMT also known as Leigh Syndrome is robbing young children of a normal life even beyond the classic CMT symptoms.
Won’t You Please Consider A Year End Gift?
Learn the top 15 ways the Hereditary Neuropathy Foundation put your generous donations to work for you this year.
PNS, It’s A Global Effort
Where do the top CMT researchers in the world unite to share leading-edge research? The Peripheral Nerve Society (PNS) meeting!
HNF & Inspire Present Poster at Global Genes 2019 Rare Drug Development Symposium
In 2009, HNF partnered with Inspire, a social network for health, to launch a CMT online support community.