Calling all members of the GNE Myopathy community!
The Neuromuscular Disease Foundation (NDF) is hosting its 5th Annual Symposium on GNE Myopathy this August 30-31st at the University of California, Los Angeles.
For those unaware of this neuromuscular disease, GNE myopathy is a rare, progressive muscle disease that affects both the upper and lower limbs and leads to an inability to properly synthesize sialic acid.
Sialic acid is an important substance made in the body that helps muscle proteins function properly. When sialic acid levels are low, the muscles begin to weaken, resulting in loss of strength and muscle function.
To read more about GNE myopathy, click here!
Back to the symposium!
The two-day event will include presentations, panel discussions, individualized breakout groups for patients, caregivers, scientists, physicians, and industry professionals – and more!
Furthermore, meals will be provided for all attendees!
Here is feedback from a GNE myopathy patient, Dr. Süleyman Kus – who was so impressed with the symposium, he became a patient advocate for the NDF:
“I felt that a new horizon full of hope has opened up for me after I contacted the NDF, [who] was very attentive and supportive… Consequently, I decided to attend the symposium with my wife. It was one of the longest journey I have taken…traveling from Istanbul to Los Angeles. We met very kind and caring people at the symposium, [where]I listened to cutting edge presentations on GNE myopathy by doctors and researchers.”
So please consider attending this great information and networking event, or pass along to someone who might benefit greatly from this incredible opportunity.
Click here to register or learn more about the event!
