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For Patients

Resources & Support

Resources:

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.

2. Blogs written by patients on:

3. Other support options:

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

GNE Myopathy International has compiled a list of actual assistive devices being used by patients. Here is a link to GNE Myopathy patients describe the devices they use for assistance. 

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. 

 

Educate physicians by bringing them this brochure.