This Woman Does Not Let GNE Myopathy Control Her
Imagine living every day with fear that paralysis may be coming. The idea always lingering in the background, ominous. That’s the case for Kam Redlawsk.
- Rare Disease News
World Without GNE Myopathy
World Without GNE Myopathy
WWGM’s mission is to generate awareness of GNE Myopathy among patients globally, accelerate development of a therapy for GNE Myopathy, make treatments available and accessible to all patients; and to provide support to patients for leading a fulfilling and safe life.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on GNE Myopathy
A GNE Myopathy Story: When Illness Steals Your Passion
Alison Laird is 42 years old, and she has GNE myopathy. The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone,
You Won’t Believe How Long This GNE Myopathy Diagnosis Took!
According to a first-person story on the Global Genes’ Rare Daily website, Tara Voogel and her family were plagued by a medical mystery for 40
Four Reasons You Should Join a GNE Myopathy Registry
For those people struggling with GNE myopathy, there is someone who wants to hear from you. Whether you’re a patient or a loved one of
Join the Neuromuscular Disease Foundation’s #RareReality Campaign
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare
Register Now to Attend the Symposium on GNE Myopathy for Free!
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
