About WWGM

World Without GNE Myopathy (WWGM) is an organisation dedicated to finding therapies to GNE Myopathy and other rare diseases in general. Headquartered in New Delhi, India, WWGM has a global outreach and is committed to spreading awareness of GNE Myopathy across the world. Internationally, it is also recognised as‘GM International’.

The organisation was founded in 2015 by parents, Dr Alok Bhattacharya and Dr Sudha Bhattacharya, with the mission of finding a cure changes for their daughter Shilpi who is a diagnosed GNE Myopathy patient. Dr Alok Bhattacharya, Dr Sudha Bhattacharya and Shilpi are all Managing Trustees of WWGM (including GM International). Today, WWGM is an international group of GNE Myopathy patients., their family and friends with the mission to generate awareness about this rare genetic disorder amongst patients and communities worldwide and provide information and support to the ones affected.

Classified as a rare disease, GNE Myopathy often goes as undiagnosed because of lack of awareness amongst patients and clinicians alike. The organisation’s mission statement is

  • To generate awareness of GNE Myopathy amongst patients and researchers globally.
  • Accelerate development of therapy including gene therapy for GNE myopathy.
  • Make treatments available and accessible to all patients at informal costs.
  • Provide support to the ones affected for leading a more fulfilling life.

WWGM aims to be a cohesive, patient centric, and treatment specific platform that brings together clinicians, researchers, scientists, and the affected patient communities to identify and work towards therapies that could ultimately lead to finding a cure for GNE Myopathy. It is designing a path that is mostly needed of GNE Myopathy from being a no cure genetic disorder to being at par cure available genetic disorder. And it is trying to achieve this objective working across the realms of science, medicine and technology that are supported by healthcare, regulatory and government organisations.

Scientific Advisory Commitee

A major objective of WWGM is to promote research that will accelerate discovering cures for GNE Myopathy and other rare genetic disorders. WWGM-SAC (Scientific Advisory Committee) has been constituted that will formulate policies and oversee their implementation towards this objective. The committee members are eminent scientists with significant contributions in both basic and clinical sciences. The members also have extensive experience in formulating and implementing policies at the national level.
Please click here to find out more about our SAC.