GNE Myopathy patient Kam Redlawsk honored with 2021 Rare Impact Award
Congratulations to GNEM patient Kam for receiving NORD's 2021 Rare Impact Award. This prestigious award is given to advocates who make an impact on [...]
2021 Q2 Newsletter
Get the latest updates from our CEO, see what we've been up to, and hear about what we've got coming up next in our [...]
“Business Owners With Disabilities: Stronger Together”
Keep reading to find out how Kevin a GNEM patient has grown his thriving dog boarding business in the face of adversity and how [...]
Expanding Knowledge on GNE Myopathy
A Q&A with Tahseen Mozaffar, MD Tahseen Mozaffar, MD, is a neurologist and director of the ALS & Neuromuscular Center at the University of [...]
Neuromuscular Disease Foundation Announces $750K+ in Awards for GNE Myopathy Research & Programs
Neuromuscular Disease Foundation (NDF) is pleased to announce the GNE Myopathy related research projects selected for funding in 2021. Recipients include a global coterie of GNEM [...]
2021 Q1 Newsletter
Get the latest updates from our CEO, see what we've been up to, and hear about what we've got coming up next in our [...]
Save the Date: Our Gala is Back! November 14, 2021
A big shout-out to our supporters at Looking Beyond for our first generous grant of 2021 and all our supporters who've raised money online [...]
Leading NIH Expert on GNE Myopathy Joins the Neuromuscular Disease Foundation
Dr. Nuria Carrillo joins the Staff at Top Patient Advocacy organization for GNE Myopathy Neuromuscular Disease Foundation (NDF) CEO Lalé Welsh announced today that Dr. Nuria [...]
GNEM Symposium Speaker Series to Go Virtual
First Online Presentation Expands Reach and Increases Impact The Neuromuscular Disease Foundation (NDF) will launch its annual Symposium on GNE Myopathy Speaker Series on Friday, [...]
Jewish Journal: “Educating the Community About Jewish Genetic Diseases”
NDF sponsored an educational program in Los Angeles with the Jewish Genetic Disease Consortium and JScreen to educate community members and clergy about the importance [...]
