NDF’s Research Program (IGTDP) Moves Closer to a Cure for GNE Myopathy (GNEM)
In 2020, The Neuromuscular Disease Foundation (NDF), a Beverly Hills based non-profit in order to advance research to end the muscle wasting disease, began [...]
Family Planning? Have You Considered Genetic Screening?
For individuals whose families carry genetic diseases such as GNE Myopathy (GNEM), genetic screening is the best-known tool for increased awareness among carriers of [...]
Life with GNEM: Voices from around the World Lift the Veil on the Patient Experience – Part 2
Click here for Part I Do you recall your initial thoughts when you received your diagnosis? When I was diagnosed by a doctor 17 [...]
Media Messaging on Inter-abled Relationships: What Are We Saying to The Disabled Community?
The trending Netflix show “Love on The Spectrum” features Autistic twenty-somethings who are navigating the dating world in search of long-term partners. This series [...]
Life with GNEM: Voices from around the World Lift the Veil on the Patient Experience – Part 1
GNE Myopathy is a rare genetic disease with a worldwide presence. There are currently 2,000* identified cases on 6 continents. The Neuromuscular Disease Foundation [...]
Breaking News for Rare Disease Patients – NDF among 85 Rare Disease Advocacy Groups Urging Senate to Include RARE Act in New Legislation!
The Neuromuscular Disease Foundation (NDF) is proud to be among the eighty five advocacy organizations representing people living with rare diseases that recently came [...]
Consciously Shifting the Dynamic of Patient Storytelling
The Neuromuscular Disease Foundation and RAM Challenge You to Change the Way You Tell Patients’ Stories When the NDF interviews a patient to publish [...]
Sure, You’ve Heard About GNEM. But Do You Know About the Bulgarian Variant?
GNEM, commonly called GNE myopathy, “is a rare (autosomal recessive) genetic disorder that causes progressive skeletal muscle atrophy and weakness.” Previous names of the condition include [...]
GNE Myopathy – Will Today’s Patients See a Treatment That Will End GNEM in Our Lifetime?
By Dana Corddry I’ve known people to almost faint at the mention of words like “cancer,” “heart disease,” or “dementia,” imagining the uncertainty of one’s [...]
Motherhood Reflections: Exploring Our Journeys & Fostering Emotional Wellness For Ourselves & Our Families With Neuromuscular Disease Foundation’s Emotional Wellness Director Carol Gelbard, LCSW
NDF’s Emotional Wellness Director Carol Gelbard, LCSW, participated in the RARE MAMAS RISING podcast by Nikki McIntosh. The Mother's Day special was released on [...]