Assistive Devices and Mobility Aids
Patients with GNE Myopathy experience physical disabilities that may affect their balance, walking, and use of hands. With proper assessment from a physical or an occupational therapist, some of these devices may be appropriate for each patient’s needs.
Patients may need canes, walkers, wheelchairs, scooters, and orthotic devices such as ankle-foot orthoses (AFOs) to assist with mobility. Our interactive Assistive Devices Presentation provides an evolving, patient-reported, and detailed description of items that are found to be helpful in day-to-day life with GNE Myopathy.
Let Patient Advocacy Program Manager Amy give you a quick introduction on how to use this interactive resource for adaptive devices.
This comprehensive presentation contains hundreds of vetted, assistive devices and gadgets to make life with neuromuscular disease easier.
Thank you to our global patient community members who have contributed to this presentation. If you would like to contribute ideas for consideration to be included in this presentation, please contact us.
Content provided on this presentation, including information that may be provided directly or by linking to a third-party website, is provided for informational purposes only and does not constitute an endorsement by NDF or its affiliates of any websites or specific products.
This patient resource presentation and download-able document do not provide medical advice. Please contact your medical professional with any specific questions you might have.
Patient-Recommended Assistive Devices
In our continued effort to provide support to our patient community, our Certified Patient Advocates have also created a comprehensive list of some suggested daily living aids/adaptive devices for GNE Myopathy patients. This collaborative document lists functional and practical aides that people across the GNE Myopathy community have found helpful for various areas of daily living including dressing, eating, hygiene needs, etc.
World Without GNE Myopathy (a patient advocacy group in India) has also compiled an additional list of assistive devices being used by patients.
GNE Myopathy Patient Blogs:
Read, in their own words, about the personal journeys of GNE Myopathy patients around the world.
- Living With HIBM – Written by GNE Myopathy patient and psychiatrist Dr. Jennifer Yashari
- Tara Talks GNE Myopathy – Recent news, research, and patient stories written by NDF Patient Advocacy Program Manager, Tara Voogel
- Curb Free with Cory Lee – Travel journal written from a wheelchair user’s perspective by Cory Lee
- Kam Redlawsk shares her thoughts on living with debilitating, degenerative conditions through art and writing.
- Saskia Melches (in German) Saskia wants to move people, give them courage, pass on a more positive way of thinking, reduce fear of contact, and support people in mastering every situation in life.
Other GNE Myopathy Organizations:
- The Association Gli Equilibristi HIBM – Italy
- World Without GNE Myopathy – India
- Patient Association for Distal Myopathies (PADM) – Japan
Other Relevant Organizations:
- Global Genes, whose mission is to connect, empower and inspire the rare disease community.
- 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 organizations from 72 countries (including NDF) that work together to improve the lives of the 30 million people living with rare diseases in Europe.
- Christopher and Dana Reeve Foundation offers information about various assistive technologies
- Muscular Dystrophy Association (MDA) – USA
- Genetic Testing Options and Links
- Genetic Alliance – A health advocacy organization
- 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 PDF checklist for people with neuromuscular diseases
Diagnosed patients can e-mail us if interested in joining our registry
“Exploring Intimacy & Physical Connection for Neuromuscular Disease Patients and Their Partners”
“From Personal Trauma to Triumph: Lessons on overcoming emotional and physical limitations”
“The Role of Physical Therapy in the Functional Management of People with Neuromuscular Disease”
“Nutrition for an Optimized Life” “Nutrition for an Optimized Life”“Nutrition for an Optimized Lif Op
“Assistive Technologies for people living with GNE Myopathy” “Assistive Technologies f”
“Adaptive Devices to Increase Independence in Everyday Life with Neuromuscular Disease”
Snippets: Informative Excerpts from our webinars
Dr. Sepideh Tabibian: Emotions
Dr. Sepideh Tabibian: Mind/Spirit
Dr. Sepideh Tabibian: Movement
Dr. Sepideh Tabibian: Nutrition
Sogol Ash, MS: Nutritional Daily Tips
Sogol Ash, MS: Food & Brain Health
Sogol Ash, MS: Protein & Muscles
Sogol Ash, MS: Real Whole Foods