Events

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    22nd Meeting of the World Muscle Society

    is going to be held on 3-7 October, 2017 at St. Malo, France. Treatment of neuromuscular disorders is one of the areas that will be discussed.

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    16th Asian and Oceanian Myology Center Annual Scientific Meeting 2017: Enabled Living - Disabled but not Handicapped

    Will be held in the Grand Copthorne Hotel in Singapore from August 6-8. 

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    Rare Disease Day

    Being observed with number of activities around the World. For an activity near your area. Please see  

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    2nd World Congress of Rare Diseases & Orphan Drugs

    is going to be held on June 17-20, 2017 at London, UK. For details see http://rarediseases.conferenceseries.com/europe/  

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    Webinar on: “The Promise on Potential Therapies for GNE Myopathy: Developing a Patient Centric Path to Cure”

    For details contact wwgm.india@gmail.com Saturday,September 17th, 2016.

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    Recommendations of the Workshop “To Develop a Scientific Agenda for Research on Rare Diseases”

    Rare Disease day Essay Contest Winning Entry April 22-23, 2016 at Indian national Science Academy, New Delhi.

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    A Workshop to develop a scientific program for research on Rare Diseases

    April 22-23, 2016 at Indian National Science Academy, New Delhi

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    RE(ACT)CONGRESS March 9-12, Barcelona, Spain

    http://www.react-congress.org/ Rare Disease Awareness Essay Contest Rare Disease Race: http://racefor7.com/ For events around the World: http://www.rarediseaseday.org/

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    4th Patient Webinar on 8th July

    Living with GNE Myopathy: Employment & Finance

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    A Meeting on “Finding Cure & Management of Rare Diseases”, February 23rd, 2017

    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) &
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    Annual Conference of “Indian Society of Clinical Research, Feb 10-11, 2017 in Mumbai, India

    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-bu
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    Blue Ribbon Rare Disease Symposium and Film Festival 2017, Centre for Health Ecologies and Technology (CHET) International Institute for Art, Culture and Democracy (IIACD), 17-18th March, 2017, Bengal

    Alok Bhattacharya participated in the meeting and gave a talk on “National Policy towards finding Cure and Management of Rare Diseases”.

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    “National Initiatives on Rare Diseases” (NIRD) Consultation Meeting and launch of Rare Disease Registry, April 26-27, 2017

    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”.

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    International Clinical Trials Day Celebrations at FDA Bhavan, New Delhi on May 21st, 2017

    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 o
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    Participation in policy development(under Activities & Participation)

    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 an
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    Rules for clinical trials

    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 becom
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    Scientific Advisory Committee(Under Board of Trustees)

    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 overse
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    Webinar on Exercises for GNE Myopathy by Mr. Shrader, NIH on October 14, 2017