Activities & Participation

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. Soumya Swaminathan, Director General, Indian Council for Medical Research (ICMR) & Secretary Department of Health Research (DHR), Government of India was the Chief Guest and the meeting was conducted by Dr. V.M. Katoch, former Director General, ICMR, and Dr. Madhulika Kabra, Professor of Paediatric Genetics, AIIMS. The meeting was attended by all stakeholders including Office of the Drug Controller General of India, clinicians, pharmaceutical companies, basic scientists, social scientists and patient groups. The report of the meeting can be downloaded from here.

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:

Shilpi was also covered by FirstPost talking about what is needed to help patients with rare diseases.

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, Bengaluru

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

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”.

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 of rare genetic disorders.

Participation in policy development

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 and research towards development of cures for rare diseases. For our detailed response please see..

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 becomes faster and easier. For our detailed comments please see