The Demystifying Rare Genetic Diseases project kicks off with the launch of the first clinical poster for the ultra-rare genetic disease, GNE Myopathy in Sahakarnagara UPHC, Bengaluru on April 5, 2024. The project aims at spreading awareness and developing innovative Information, Education and Communication (IEC) materials to engage relevant stakeholders and accelerate diagnostics and therapeutics development.
GNE Myopathy is an ultra-rare genetic disease characterised by progressive atrophy (wasting away) of skeletal muscles. The prevalence is estimated to be 1 to 9 in 1 million, evidently, there are many undiagnosed cases in India due to lack of awareness.
To create more awareness, the Tata Institute for Genetics and Society, in collaboration with World Without GNE Myopathy (WWGM), has created a poster on GNE Myopathy, especially aimed at educating healthcare providers.
Let’s join hands to raise awareness and support those affected by GNE Myopathy. For further inquiries, reach out to WWGM:
📧 Email: wwgm.india@gmail.com
🌐 Website: https://www.gne-myopathy.org/
Raise awareness, to make a difference!
