DST-CPR-IISc in partnership with Ashoka University invites you to
Rare Diseases in Public Health
An Indian Context
Session I: Equity in the representation of Rare Diseases in Public Health agenda
February 19, 2022 | 4:00 PM – 6:00 PM (IST)
Click here to Register for this session
Session II: Strengthening the Rare Disease Registry in India
February 20, 2022 | 9:30 AM – 12:00 PM (IST)
Click here to Register for this session
Session I: Equity in the representation of Rare Diseases in Public Health agenda
This International Rare Diseases Day 2022, we take a critical look at the representation of rare diseases (RDs) in the health agenda and policy of the country and seek answers to the following questions:. Do RDs receive equal representation with common diseases in the country’s health agenda and policies in the public and private sectors? How can we ensure equity in the representation of RDs in public health programmes and in health systems delivery? How do we ensure equity in the representation of RDs in the private sector? We invite an expert panel to deliberate over this critical matter to ensure equity of RDs in public health in the Indian context.
Keynote Address
Dr. Jyotsna Dhawan
CEO, DBT/Wellcome Trust India Alliance
Welcome Address
Prof. L.S. Shashidhara
Professor and Dean of Research, Ashoka University
Panelists
Dr. Arjun Singh
National Advisor, Rashtriya Bal Swasthya Karyakram (RBSK)
Dr. Ratna Devi
Chair of The Board of International Alliance of Patients’ Organizations (IAPO)
Dr. Narendra Chirmule
CEO, Symphony Tech Biologics, and former Head of R&D Biocon
Dr. Prashanth Srinivas
Assistant Director (Research), Health Equity cluster lead, Institute of Public Health
Moderators
Dr. Mohua C. Choudhury
DST-STI Policy Fellow
DST-CPR-IISc Bengaluru
Dr. Pragya Chaube
Senior Project Associate
DST-CPR-IISc Bengaluru
Session II: Strengthening the Rare Disease Registry in India
This International Rare Diseases month 2022, we take a comprehensive look at the rare diseases registry mechanism in India and examine greater ways and means to strengthen it in the health policy agenda of the country. We invite an expert panel from India and overseas to deliberate on the strengthening of the rare disease registry in India. What is the present status of the National Registry for Rare Diseases? What could be the potential ways and means to strengthen it? Learning from experiences of APEC and exploring the possibilities of adopting similar strategies in the Indian context.
Keynote Address
Dr. V. M. Katoch
Former Director General, Indian Council of Medical Research
Welcome Address
Dr. Akhilesh Gupta
Senior Adviser/Scientist-H, Head of Policy Coordination & Programme Management (PCPM) Division, Department of Science & Technology (DST)
Panelists
Prof. Matthew Bellgard
Director of eResearch, Division of Research, Queensland University of Technology
Prof. Alok Bhattacharya
Professor & Head of the Biology Department, Ashoka University
Dr. Deepa Bhat
Genetic Counselor and Associate Professor, JSS Medical College
Dr. Reeta Rasaily
Former Scientist ‘G’ ICMR and Programme Officer for Rare Disease Registry
Dr. Sudha Bhattacharya
INSA Senior Scientist, Ashoka University
Moderators
Dr. Mohua C. Choudhury
DST-STI Policy Fellow
DST-CPR-IISc Bengaluru
Dr. Anjali Taneja
Associate Director
Science Policy Initiative
Office of Research & Development
Ashoka University
Event Organizers
Core Team
Dr. Mohua Chakraborty Choudhury (DST-CPR-IISc)
Dr. Anjali Taneja (Ashoka University)
Dr. Pragya Chaube (DST-CPR-IISc)
Supporting Team
Dr. Moumita Koley (DST-CPR-IISc)
Mr. Saikat Batabyal (DST-CPR-IISc)
Ms. Sowmya Narsipur (DST-CPR-IISc)