pns meeting

PNS, It’s A Global Effort

by | Nov 7, 2019 | 0 comments

Where do the top CMT researchers in the world unite to share leading-edge research? The Peripheral Nerve Society (PNS) meeting!

This meeting takes place once a year in cities around the world. This year’s location was the stunning city of Genova, Italy, June 22-26 at the Centro Congressi, Porto Antico Di Genova. There is no better opportunity to connect one-on-one with international experts from multiple disciplines on the topics of Charcot-Marie-Tooth and related Inherited Neuropathies, Inflammatory Neuropathies, pain and more.

The four-day program was packed with talks, presentations, collaborative meetings, educational break-outs and poster sessions. HNF was honored to present at the annual Inherited Neuropathy Consortium (INC) meeting on our new Movement is MedicineTM program, an innovative research initiative to bring exercise modalities to all patients with CMT. These studies have the potential to be an adjunct therapy to improve functional outcomes and endpoints in future CMT patient clinical trials.

In addition, HNF is a key partner of the INC and is on the internal Diversity Core Committee to help recruit a diverse patient population for the INC research studies. We are very excited to have implemented a Voice Survey in Spanish to support the Latino community to participate in clinical trials. We launched the study on September 16th and welcome participation!


Allison Moore, founder/CEO of HNF presented on three research studies spotlighting the Global Registry for Inherited Neuropathy:

  1. CMT1A and Impaired Patient Mobility: Expressions, Remedies and Impact on Quality of Life
  2. The Path To Diagnosing Charcot-Marie-Tooth Disease: The Patient Experience
  3. “Examination of Risks/Benefit Profile of Medical Cannabis In CMT and HNPP and Chronic Pain Patients” – Brian Piper, Phd.

HNF was front and center at the Pharnext Presentation, as Scientific Advisory Board Member Michael Sereda presented the biomarker results of PXT3003 and world renowned Induced Pluripotent Stem Cells (iPSC) lines researcher Mario Saporta gave a thorough overview of CMT. They highlighted results from pivotal phase III trials for the first potential drug to treat CMT1A, PXT3003.

 “I have waited years for this moment and am grateful to Pharnext for choosing CMT as their first pipeline class of drugs!” – Allison Moore, HNF Founder & CEO

A focus group was also hosted by Vitacces in collaboration with Pharnext Pharmaceuticals, for their CMT research app, CMT&Me. HNF was honored to join Mark Larkin, founder of Vitaccess and his team, the distinguished advisory board, during this collaborative discussion along with other advocacy groups from around the world: CMTA, CMT France/Europe, CMT UK, and ACMT – Rete (Italy) to ensure that patient voices are being heard and continue to align with the most vital needs of the community. To join CMT&ME: Search your app carrier.

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