Where do the top CMT researchers in the world come together to share leading-edge research? The Peripheral Nerve Society (PNS) annual meeting.

This meeting takes place once a year in cities around the world. In 2019, the PNS meeting was held in Genova, Italy, June 22 to 26 at the Centro Congressi, Porto Antico di Genova. There is no better opportunity to connect with international experts from multiple disciplines on topics including Charcot-Marie-Tooth disease, related inherited neuropathies, inflammatory neuropathies, and pain.

The four-day program included talks, presentations, collaborative meetings, educational breakout sessions, and poster presentations. HNF was honored to present at the annual Inherited Neuropathy Consortium (INC) meeting, highlighting our Movement is Medicine program, an innovative research initiative designed to bring exercise modalities to all patients with CMT. These studies have the potential to serve as an adjunct therapy to improve functional outcomes and endpoints in future CMT clinical trials.

HNF is also a key partner of the INC and serves on the internal Diversity Core Committee to support recruitment of a diverse patient population for INC research studies. HNF launched a Voice Survey in Spanish to support the Latino community’s participation in clinical trials, going live on September 16th.

Allison Moore, Founder and CEO of HNF, presented three research studies spotlighting the Global Registry for Inherited Neuropathies (GRIN):

  • CMT1A and Impaired Patient Mobility: Expressions, Remedies and Impact on Quality of Life
  • The Path to Diagnosing Charcot-Marie-Tooth Disease: The Patient Experience
  • “Examination of Risks/Benefit Profile of Medical Cannabis in CMT and HNPP and Chronic Pain Patients,” Brian Piper, PhD

HNF was also represented at the Pharnext presentation, where Scientific Advisory Board Member Michael Sereda presented biomarker results for PXT3003, and Mario Saporta, a researcher in induced pluripotent stem cells (iPSC), provided an overview of CMT. Together they highlighted results from pivotal Phase III trials for PXT3003, the first potential drug candidate to treat CMT1A.

“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 and CEO

A focus group hosted by Vitaccess, in collaboration with Pharnext Pharmaceuticals, discussed the CMT research app CMT&Me. HNF was honored to join Mark Larkin, Founder of Vitaccess, and his team, along with a distinguished advisory board and advocacy organizations from around the world, including CMTA, CMT France/Europe, CMT UK, and ACMT-Rete (Italy). The collaborative discussion focused on ensuring that patient voices are heard and continue to align with the most important needs of the community. To join CMT&Me, search for the app in your app store.