World Without GNE Myopathy
GNE Myopathy is a rare genetic disorder that causes progressive weakening of the muscles, starting with lower and upper limbs. Symptoms appear in adulthood, generally by the age of 20-30 years. The exact symptoms and nature of disease progression vary a lot between individuals. In general, early symptoms include foot drop, and difficulty in walking and climbing stairs, although in some patients the weakness in upper limbs may appear first.
Gradually there is difficulty in standing up from squatting position, and weakness of hand and shoulder muscles. Eventually most skeletal muscles of the body get affected, although function of heart and lungs is not adversely impacted in most patients. It is said that within 20 years of initial symptoms most patients are wheel chair-bound; however, there are large individual variations.
WWGM is a registered charitable organization headquartered in New Delhi. It was founded in 2015 by a group of people living with a rare genetic disease called GNE myopathy and their family members. The impetus to start WWGM came from the little awareness of GNE myopathy in society and the absence of a treatment for the disease.
The founders of WWGM, Prof. Alok Bhattacharya and Prof. Sudha Bhattacharya, are leading Indian scientists with outstanding credentials who are uniquely placed to accelerate scientific research towards a treatment for GNE myopathy. WWGM is the only organization in India and one of the few globally to be working for GNE myopathy.
Meet our team21st Nov 2026 —
WWGM Annual Conference 2026 (Patient Day)
Location: National Institute of Plant Genomic Research, New Delhi
25th–26th July 2025 —
A Discussion Meeting on Rare Genetic Disease Drug Trials
Location: Indian National Science Academy, New Delhi
“We are at a time when new scientific technologies are being created and developed at an incredible pace globally. Yet, many in the rare disease community do not have the scientific background to track and understand these scientific advancements.”
Welcome to my new series of blogs about stories of rare diseases that manifest later in life. Here I present the stories of three other strong-willed GNE Myopathy women coming from different socio-economic backgrounds and different life …
Symptoms of rare diseases often creep up quietly, rather than arriving with the brutal shock of a sudden lifestyle upheaval. The change is gradual—unyielding and relentless in its impact. One moment, I was darting around the globe, making …
Shikha’s family migrated from Rajasthan to Kolkata several generations ago and set up a flourishing textile business. She had always seen a life of plenty, although tempered with discipline and hard work. She was gifted with great physique, …
