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:
- 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
- Genetic testing from Advancement of Research for Myopathies
- Referral and Education at Sephardic Health Organization
- Genetic Alliance- A health advocacy organzition
- Blog written by a non-GNE Myopathy patient about traveling in a wheel chair "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 dibilitating medical conditions.
- Preparing for Emergencies - A checklist for people with neuromuscular diseases
- Online tracking of symptons through GNEM-DMP to help you track your sympotms (and help docotrs and researchers gain further understanding)
- Ultragenyx Patient Advocacy
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.
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.