Peripheral Nerve Society

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The Peripheral Nerve Society is an international non-profit organization of scientists, physicians, and other healthcare providers working together to investigate and treat diseases of the peripheral nervous system.

10/12/2026

The Molecular NeuroGenomics Group is back!
We’re back! 👋
A few years ago, we introduced you to our team and our research. This week, we’re returning to take you a little deeper into how we investigate Charcot-Marie-Tooth disease (CMT).
How can a donated biosample lead to a genetic discovery? What can long-read sequencing reveal that other methods miss? And why do we study CMT using motor neurons, flies, yeast, and other cellular models?
Over the next seven days, different members of our team will show how their expertise contributes to the journey from a patient’s DNA to a better understanding of disease mechanisms.
First up: Carlos, who introduces you to what the Molecular Neurogenomics Group is all about.

LAB TAKEOVEREvery month, one research laboratory takes over the PNS social media channels🔬 Meet the team Get to know the...
10/12/2026

LAB TAKEOVER
Every month, one research laboratory takes over the PNS social media channels
🔬 Meet the team
Get to know the people behind the research
🧬 Discover their science
Learn about their projects and latest findings
🧪 Explore the lab
See their facilities, techniques, models and daily work
🌍 Connect worldwide
Highlighting peripheral nerve research across the globe

PAG Takeover | European CMT Federation (ECMTF)A strong partnership for a stronger CMT community. The relationship betwee...
10/09/2026

PAG Takeover | European CMT Federation (ECMTF)

A strong partnership for a stronger CMT community. The relationship between the European CMT Federation (ECMTF) and the Peripheral Nerve Society (PNS) is built on dialogue, trust and a shared commitment to improving the lives of people affected by peripheral nerve disorders.

Being invited to PNS meetings gives our community an invaluable opportunity to learn directly from the latest scientific and clinical developments, meet researchers and clinicians, and better understand how the field is moving forward.

Just as importantly, PNS creates space for the patient voice to be heard. Through patient panel workshops, conference participation, social media and newsletter features, people living with CMT and Patient Advocacy Groups can bring their priorities, experiences and needs directly into conversations with the scientific and clinical community.

PNS has consistently been open, collaborative and attentive to PAG initiatives, offering ECMTF and its members opportunities to showcase their activities, share ongoing projects and strengthen connections across the peripheral nerve community. This is what meaningful partnership looks like: patients, clinicians and researchers learning from one another and moving forward together.

PAG Takeover | European CMT Federation (ECMTF)Patient organizations can achieve more when they work together. ECMTF conn...
10/08/2026

PAG Takeover | European CMT Federation (ECMTF)

Patient organizations can achieve more when they work together. ECMTF connects CMT organizations across countries to share know-how, raise awareness, support people living with CMT and their families, and strengthen research.

Our activities include:
-promoting international exchange between Patient Advocacy Groups, so organizations can share experience, resources and best practices;
-supporting CMT awareness campaigns to improve recognition and understanding of the disease.

October is CMT Awareness Month in Europe, when ECMTF and its member organizations join forces to increase visibility, share reliable information and amplify the voice of the CMT community;

-contributing to research funding initiatives and collaborative calls, helping bring patient priorities into research projects;
-supporting ECRA – the European CMT Research Association, which creates a structured environment for collaboration between patient organizations and the scientific community.

These activities have one common objective: to turn the experience and priorities of people living with CMT into collective action and measurable progress. From local support to international collaboration: together for a brighter tomorrow.
Learn more: ecmtf.org | ecra-np.org | cmt-awareness.com

PAG Takeover | European CMT Federation (ECMTF)Unmet needs in CMT go far beyond the absence of a cure.People living with ...
10/07/2026

PAG Takeover | European CMT Federation (ECMTF)

Unmet needs in CMT go far beyond the absence of a cure.
People living with Charcot–Marie–Tooth disease still face major gaps in care: no approved disease-modifying treatments for most forms of CMT, uneven access to specialised rehabilitation, persistent mobility and functional limitations, mental-health needs, and barriers affecting education, employment and social participation.
For many patients, the challenge is not only disease progression itself, but also access to the right support at the right time. Multidisciplinary care, tailored rehabilitation, assistive solutions, psychological support and better pathways between specialist centres and local services can make a substantial difference to independence and quality of life.
At the same time, research must continue to move closer to what matters most to patients: meaningful functional outcomes, better symptom management, more inclusive clinical trials and, ultimately, effective therapies that can slow, stop or reverse disease progression.
Addressing these unmet needs requires sustained collaboration between patients, PAGs, clinicians, rehabilitation professionals and researchers.

PAG Takeover | European CMT Federation (ECMTF)The European CMT Federation (ECMTF) brings together patient organisations ...
10/06/2026

PAG Takeover | European CMT Federation (ECMTF)
The European CMT Federation (ECMTF) brings together patient organisations dedicated to Charcot–Marie–Tooth disease (CMT), creating a stronger collective voice for people living with CMT and their families.
Rooted in Europe and connected internationally through its member and associate organisations, ECMTF promotes collaboration across borders, supports the exchange of experience and expertise, and helps ensure that the priorities of the CMT community are heard.
By connecting patient organisations with one another — and by building bridges with researchers, clinicians and other stakeholders — ECMTF works towards better awareness, better care, stronger research and, ultimately, effective treatments.
Together, we can make the CMT community stronger, more connected and more visible.
Learn more: ecmtf.org

10/06/2026

🧡 October is European CMT Awareness Month! 🧡
This month, we come together to raise awareness of Charcot-Marie-Tooth (CMT) disease, one of the most common inherited neurological disorders affecting the peripheral nerves. By increasing understanding, supporting research, and amplifying the voices of those living with CMT, we can help drive progress towards better treatments and ultimately a cure.
Join us throughout October as we share facts, stories, research advances, and ways to get involved. Together, we can make a difference.

🚀CMT Awareness Month!For CMT Awareness Month, we highlight a new study that addresses an important question in CMT resea...
09/29/2026

🚀CMT Awareness Month!
For CMT Awareness Month, we highlight a new study that addresses an important question in CMT research: Can a gene-silencing treatment delivered into the spinal fluid reach the right cells in peripheral nerves and lower its intended target?
CMT1A is caused by having an extra copy of a gene called PMP22, which results in too much PMP22 protein being expressed. This disrupts the normal function of Schwann cells—the cells that make myelin, the protective covering around peripheral nerves.
In this study, a virus containing the gene-silencing therapy was delivered into the spinal fluid of non-human primates and researchers were later able to detect it in peripheral nerves in both the arms and legs, including portions of nerves far from the injection site. Importantly, PMP22 levels were also reduced in these nerves, showing that the treatment not only reached its destination but also engaged its intended genetic target.
Why does this matter? For a treatment targeting Schwann cells to work in CMT1A, it must be able to reach these cells along peripheral nerves, which extend very long distances throughout the body. This study provides important evidence that AAV9 can deliver a gene-silencing treatment to distant peripheral nerves in a large-animal model.
These findings represent an encouraging step in the development of disease-modifying treatments for CMT and set the stage for first-in-human clinical trials to test the safety and efficacy of these treatments in patients with CMT1A.
https://loom.ly/qDZW4Sk

📣 A landmark publication is helping shape the future of Charcot-Marie-Tooth disease (CMT) clinical trials.Leading CMT or...
09/22/2026

📣 A landmark publication is helping shape the future of Charcot-Marie-Tooth disease (CMT) clinical trials.
Leading CMT organizations, clinicians, and pharmaceutical companies have joined forces through the ToPIC: CMT (Together Patients, Industry and Clinicians) initiative to develop the first unified recommendations for the design of CMT clinical trials. The guidance was published in the Journal of the Peripheral Nervous System and aims to support the development and regulatory approval of new therapies for CMT.
The recommendations address key challenges in CMT research, including:
• Reducing placebo exposure through innovative trial designs
• Recruiting patients based on clinical characteristics as well as genetics
• Using meaningful functional and patient-reported outcome measures
• Incorporating biomarkers to guide drug development
• Supporting early intervention and lifelong treatment strategies
• Establishing practical safety and regulatory frameworks
With no approved treatments currently available for CMT, this collaborative effort represents an important step towards accelerating therapeutic development and improving outcomes for patients worldwide.
Read the full publication here: https://onlinelibrary.wiley.com/doi/10.1111/jns.70146

Chemotherapy-induced peripheral neurotoxicity (CIPN) remains one of the most common and challenging complications of can...
07/14/2026

Chemotherapy-induced peripheral neurotoxicity (CIPN) remains one of the most common and challenging complications of cancer treatment. While we've made great strides in understanding it, measuring treatment success and finding effective therapies are still major hurdles.
In the latest episode, Professor Susanna Park and Dr. Paola Alberti sit down with Professor Jennifer Gewandter—an internationally recognized expert in pain research, peripheral neuropathy, and clinical trial methodology. 🧠✨
Together, they dive deep into how researchers evaluate CIPN and discuss how clinical trials can be redesigned to better reflect what matters most to patients.
👇 Tune in now to listen to this crucial conversation! https://sites.libsyn.com/572790/clinical-translation-and-symptom-management-in-chemotherapy-induced-peripheral-neuropathy

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1935 County Road B2 W
Roseville, MN
55113

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952-545-6284

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