WWGM (World Without GNE Myopathy) is participating in the Airtel Delhi Half Marathon (ADHM) on 21st October to raise funds for our various activities including actively finding therapies for GNE Myopathy. ADHM is supposed to be the largest platform for charitable giving in India. We do need your help to make this a success. We and the patients will highly appreciate if your organisation (includingRead More...
About the Symposium
Please join us for our 5th Annual Symposium on GNE Myopathy (HIBM), a two-day, fact and fun-filled event including up-to-the-minute information; presentations; panel discussions; and individualized breakout groups for patients, caregivers, scientists, physicians, and industry professionals. Meals will be provided for all attendees.
Being observed with number of activities around the World. For an activity near your area. Please see
is going to be held on June 17-20, 2017 at London, UK.
For details see http://rarediseases.conferenceseries.com/europe/
For details contact email@example.com
Saturday,September 17th, 2016.
Rare Disease day Essay Contest Winning Entry
April 22-23, 2016 at Indian national Science Academy, New Delhi.
April 22-23, 2016 at Indian National Science Academy, New Delhi
Rare Disease Awareness Essay Contest
Rare Disease Race: http://racefor7.com/
For events around the World: http://www.rarediseaseday.org/
Living with GNE Myopathy: Employment & Finance
WWGM in association with Jawaharlal Nehru University and All India Institute of Medical Sciences (AIIMS), New Delhi, organized a meeting to evolve strategies and policies towards finding cure for rare diseases. Dr. SoumyaSwaminathan, Director General, Indian Council for Medical Research (ICMR) &Read More...
Shilpi Bhattacharya participated in this meeting and presented patient’s point of view in clinical research, particularly the need to have regulations that are in tune with requirement of developing therapy for rare diseases.
For details see: http://www.biovoicenews.com/need-to-buRead More...
Alok Bhattacharya participated in the meeting and gave a talk on “National Policy towards finding Cure and Management of Rare Diseases”.
Alok Bhattacharya was part of the organizing committee and gave a talk on “Research in Therapeutics”. He also participated in a panel discussion on “Drug Development & Procurement”.
Indian Society of Clinical Research and office of the Drug Controller General of India organized a half-day meeting. Both Shilpi and Alok Bhattacharya participated in this meeting and expressed their thoughts and suggestions that will help in faster approval and availability of drugs for treatment oRead More...
National Policy for Treatment of Rare Diseases (Ministry of Health)
We believe that this draft policy is not a comprehensive one and appears to address only a specific problem faced by a few patients of Lysosomal Storage Disorders. It has left out some of the larger issues of capacity building anRead More...
WWGM was also asked to comment on new rules for clinical research particularly from the perspective of rare diseases. Though the new rules have many positive changes and a higher level of transparency, we believe that it needs further modifications so that rare disease or orphan drug discovery becomRead More...
One of the major objectives of WWGM is to promote research that will lead to finding cure for GNE Myopathy and other rare genetic disorders in the shortest possible time. In order to achieve this, a Scientific Advisory Committee (WWGM-SAC) has been constituted that will formulate policies and overseRead More...