Patient Support Groups
HUDDLEs are virtual, peer-to-peer support and mentoring group meetings focused on the cognitive health & well-being of people diagnosed with GNE Myopathy. This group meets (virtually) monthly and provides a safe and confidential space for GNE Myopathy patients to talk to one another about whatever is on their minds.
Help fellow diagnosed people
Understand shared challenges
Learn from each other
Empower each other to live life to the fullest
Being new to GNE Myopathy means that I am still processing and coping with the difficulties that have changed my life. I joined this huddle to hear what others had to say about how they feel and be heard in a place where I know I’m understood. The conversation was varied and the information and support provided was very helpful!
Yesterday’s HUDDLE was so much fun. The way carried out, it sent so much of positive energy, good vibes and a place where we can share our personal observations and life experiences.
I just wanted to express my gratitude for the opportunity to connect with fellow patients in this way. We were on the phone for over an hour Sunday morning. Not only is it such a helpful exchange of practical ideas/ tips, but it’s also so therapeutic on an emotional level.
Awesome HUDDLE today. I without a doubt know we are making a profound difference one patient at a time. I feel energized in these moments.
Other Patient Support Groups & Resources:
- GNEM patient-only Facebook Group (English)
- NDF Certified Patient Advocates (CPAs) are available to patients in their home countries to offer support and guidance.
- NDF Emotional Wellness Director, Carol Gelbard, LCSW is available to meet virtually with people diagnosed with GNE Myopathy and/or their family members
- Attend one of our in-person or virtual events
If you are interested in joining or learning more about our Family Member/Care Partners’ Support Group, please take this short survey.
GNE Myopathy specific Facebook patient support groups in many different languages.
- Indian (English)
- United Kingdom (English)
- United States (English)
For Caregivers/Care Partners:
- NDF Caregiver Facebook Group
- Caregiver Action Network – An organization who aims to improve the quality of life for those who care for loved ones with debilitating medical conditions.
For the Children of GNE Myopathy Patients:
- NDF United Youth Facebook Group
For more helpful resources, visit our Patient Resources.
For a list of doctors familiar with GNE Myopathy, click here.