World Without GNE-Myopathy (India)-WWGM
Support, find, cure and treat GNE myopathy patients in India.
Work and Achievements
Since its inception in 2015, WWGM is committed to reducing human suffering by trying to find a treatment for rare neuromuscular disorders.
WWGM's achievements include:
- Providing a common platform to patients, doctors, researchers and scientists.
- Forging linkages with patients globally.
- Actively influencing government policies around rare diseases.
- Represented in the Delhi Government’s Rare Disease Committee.
WWGM’s activities include:
- WWGM organized the first international conference on GNE Myopathy in India in 2018. The conference uniquely brought together patients in conjunction with the leading doctors and scientists in the field of GNE Myopathy from India and abroad.
- WWGM is collaborating to develop treatments for rare diseases in India, such as gene therapy. These efforts include engaging with the Indian Government and organising meetings with different stakeholders on promising therapeutic platforms.
- WWGM has organised: (i) lecture workshops for raising awareness of GNE Myopathy and other neuromuscular conditions amongst doctors in India, (ii) conferences to develop rare disease policies in India.
- WWGM has brought GNE Myopathy patients in India together by creating a common and coordinated platform.
- WWGM started a novel series of 'webinars' to bring GNE Myopathy patients and medical professionals from across the world together to resolve patient-centric issues.
- WWGM is actively promoting scientific research in GNE myopathy in India.
- WWGM’s research has lead to an important scientific publication on GNE Myopathy in India.
Fund Utilisation Statement
Funds will be utilized in Initiating effort towards development of therapy to cure GNE myopathy, providing help to set up a centre for Neuro-muscular diseases for diagnosis, management and clinical trials and Increasing awareness about neglected genetic disorders.