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Educating, Empowering and Enabling People with GNE Myopathy
What is 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.
The GNE Dialogues
"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."
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