Patient Advocacy is at the core of everything we do at NDF

If you have been recently diagnosed with GNE Myopathy you may be overwhelmed and afraid; but, fortunately, you are not alone. We are the world’s largest organization focused on GNE Myopathy and we are here for you. Please see our list of resources for other groups and organizations that may also be helpful to you in different parts of the world.

There are many ways that you can connect with other patients, worldwide.

For Patients with GNE Myopathy (GNEM) / HIBM, consider:

Joining our private, patient-only Facebook Group

Our patient-only Facebook group provides a forum for patients, worldwide, to support and learn from one another.

Attending our monthly, virtual Patient HUDDLEs

Our monthly, virtual, peer-to-peer patient support meetings called HUDDLEs are confidential; giving patients an opportunity to discuss any topic in an open, safe and non-judgmental forum. People diagnosed with GNE Myopathy from all over the world join together monthly to discuss their shared experiences.

Contacting the NDF Certified Patient Advocate in your country or region.

NDF CPAs work as our partners in advocating for and creating programming in their home countries.  CPAs serve as an invaluable resource for people looking to speak to other patients in their native language.

Joining our Patient Registry

Reaching out to our Emotional Wellness Director, Carol Gelbard, LCSW

As part of our Emotional Wellness Clinic, we offer sessions that provide a mental health “check in” to help determine one’s current needs in an effort to formulate recommendations for further supportive services. The consultation may be held via telephone or video session.

Attending one of our in-person or virtual events

For Caregivers/Care Partners of patients with GNEM:

NDF Caregiver Facebook Group

NDF Caregivers Facebook Group & Virtual Support Group is a place for the family members and care givers of GNEM patients to share their personal experiences with people who understand what they are going through.

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

NDFUY is a group dedicated to supporting the children and young carers (approximate age 13-23) of our patients. Their private Facebook page offers a safe space for children of people with neuromuscular disease (not limited to GNEM) to share their experiences and offer advice to one another.

For more helpful resources, visit our Patient Resources.

For a list of doctors familiar with GNE Myopathy, click here.