There are a number of support options available. Whether you are affected by GNE Myopathy or know someone who is, sharing your experiences may help fight feelings of isolation.
1. Facebook patient support groups in many different languages.
- Indian (English)
- United Kingdom (English)
- United States (English)
2. Blogs written by patients on:
- Challenges of living with HIBM
- Recent news, research and patient stories relating to GNEM
- Thoughts on living with GNE Myopathy
- GNE Myopathy group in Italy
3. Other support options:
- Genetic Testing Options and Links
- Advancement of Research Myopathies (ARM), A non-profit organization whose primary goal is to speed up research on GNE Myopathy
- Sephardic Health Organization Referral and Education of Oriental and Sephardic Jewish Diseases
- Genetic Alliance- A health advocacy organization
- Blog written by a non-GNE Myopathy patient about traveling in a wheelchair "From A Wheelchair User's Perspective":
- Caregiver Action Network- An organization who aims to improve the quality of life for those who care for loved ones with debilitating medical conditions.
- Preparing for Emergencies - A checklist for people with neuromuscular diseases
- Online tracking of symptoms through GNEM-DMP to help you track your symptoms (and help doctors and researchers gain further understanding)
- Ultragenyx Patient Advocacy
- HIBM Research Group
- The ninth edition of the GNE Myopathy Disease Monitoring Programme (GNEM-DMP) newsletter, available to download in multiple languages here.
- NDF Caregiver Facebook Group
Assistive Devices and Mobility Aids
GNE Myopathy patients experience physical disabilities that may affect their balance, walking, and/or grip. With proper assessment from a physical or an occupational therapist, some of these devices may be appropriate for a given patient's unique needs.
Some patients use canes, crutches, wheelchairs, scooters, walkers, rollators, canes, and or orthotic devices such as leg braces, and ankle-foot orthoses (AFOs) to assist with mobility.
In our effort to provide support to our patient community, our NDF Certified Patient Advocates have created a comprehensive list of some suggested daily living aids/adaptive devices for GNEM patients. This document lists functional and practical aides that people across the GNEM community have found helpful for various areas of daily living including dressing, eating, hygiene needs, and miscellaneous. As more people in the community come across helpful items, the resources document will continue to grow. To view this compiled list: Click here to download a list of assistive devices
Additional assistive devices and supportive services:
A global group of GNE Myopathy patients, their family, and friends helping to raise awareness of GNEM worldwide.
Christopher and Dana Reeve Foundation explains various assistive technologies with a section on adapting a car for disabled patients.
Global Genes whose mission is to eliminate the challenges of persons with rare diseases.
The Jain Foundation has developed ALDA (an automated diagnostic assistant) a free online tool to help guide physicians toward the most probable diagnosis.
Patients in the News
Published June 19, 2019
Published June 2019
Published July 9, 2019
NDF Webinar - Patient Samples Update
Educate physicians by bringing them this brochure.
Diagnosed patients can join our registry by filling out a Patient Information Form:
This form can be filled out and submitted on line.