Patient Resources



Pain from multiple sources

Many patients with CMT experience chronic pain stemming from the disease state itself, as well as pain caused by the limited treatments currently available (i.e. surgery, improper use of braces and/or AFOs). Not to mention the emotional pain of living with chronic illness, especially for children and young adults navigating living with their disease.

Managing pain can be a challenge for both the patient and the health care provider. Keeping your HCP updated with your symptoms and the efficacy of your pain management program is essential for treating chronic pain successfully.

ABCs of CMT Pain Management Guide

The Hereditary Neuropathy Foundation is thrilled to introduce the “ABCs of CMT Pain Management,” a comprehensive guide that is a direct product of the Global Registry for Inherited Neuropathies (GRIN) initiative. This guide embodies the power of collective stories through patient-reported data and a resolute commitment to reshaping the narrative of pain in CMT.

HNF’s robust ABCs of CMT Pain Management Guide consists of over 80 pages of pain management options broken down into the categories of nutrition, exercise, topicals, supplements, prescription, holistic, injections, surgery, and more!

ABCs of CMT Pain Management Guide

ABCs of CMT Pain Management Guide


Did you Know?



Of CMT Patients Experience Pain

Type of Pain Experienced






Muscle Cramps or Spasms in Handes / Forearms


Muscle Cramps or Spasms in Legs / Feet

Better Data = Better Treatments


Have your voice heard by CMT researchers!

HNF is on the forefront of pain research to support CMT patients.
Tell us about your experience
with Pain & CMT

How HNF has brought awareness to Pain & CMT


Chronic Pain Assessment: Patient Perspectives

Allison Moore, HNF Founder/CEO, along with her team, took action and led the HNF groundbreaking CMT pain initiative to help the community.


HNF’s Patient-Centered CMT/HNPP Pain Summit

It was an incredible meeting of people with hereditary neuropathies and their family members, caregivers, clinicians, researchers, funding agencies, payors, leading pain experts and pharma industry coming together to get an understanding of chronic pain in the CMT/HNPP community, including its impact on quality of life.

Ensuring Patient Access and Effective Drug Enforcement Act

Signed letter to members of Congress regarding the Ensuring Patient Access and Effective Drug Enforcement Act that unanimously passed both the House and Senate and was signed into law on April 19, 2016.

Chronic Pain Patients Pinpoint the Need for Improved Methods to Assess Pain

For more information please click the button below and see page 14 of the related PDF.

Inspire™ CMT Community

Learn & share with others experiencing pain & CMT. Join the Inspire CMT Community today!

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