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For Patients

Resources & Support

Assistive Devices:

In our effort to provide support to our patient community, our NDF Certified Patient Advocates have created a comprehensive and interactive resource of some suggested daily living aids/adaptive devices for GNEM patients. This shows 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.

Let Amy & Tara give you a quick introduction on how to use this interactive resource for adaptive devices. 

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.

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:

World Without GNE Myopathy, 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 Everylife Foundation, an organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy

National Organization for Rare Disorders (NORD), a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them

Eurordis, a unique, non-profit alliance of rare disease patient organisations from 72 countries (including NDF) that work together to improve the lives of the 30 million people living with rare diseases in Europe.


The Jain Foundation has developed ALDA (an automated diagnostic assistant) a free online tool to help guide physicians toward the most probable diagnosis. 

 

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:

Educate physicians by bringing them this brochure.

Diagnosed patients can join our registry by filling out a Patient Information Form: