Rare Diseases in Public Health: An Indian Context
On the occasion of Rare Disease Month 2022, we invite you to a Joint Initiative on Rare Diseases in Public Health – An Indian Context.
Session I: Panel discussion on 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.Â
February 19, 2022Â
Click here to register for the session| Welcome |
| Introductory remarks |
| Prof. LS. Shashidhara |
| Keynote address |
| Dr. Jyotsna Dhawan |
| Lack of representation of rare diseases in public health agenda |
| Dr. Prashanth Srinivas |
| Dr. Arun Singh |
| Dr. Ratna Devi |
| Dr. Narendra Chirmule |
| Making health policies and programmes inclusive of rare diseases |
| Open-floor discussions |
| Q&A session |
| Vote of thanks and a group photograph |
Session II: Panel discussion on 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? We will learn from experiences of APEC and explore the possibilities of adopting similar strategies in the Indian context.
February 20
Click here to register for the session| Welcome |
| Welcome address |
| Dr. Akhilesh Gupta |
| Special address |
| Dr. V.M. Katoch |
| Understanding challenges in Indian RD Registry |
| Dr. Reeta Rasaily |
| Dr. Sudha Bhattacharya |
| Dr. Deepa Bhatt |
| Global Outlook: LeaGlobal Outlook: Learning from APEC experience |
| Prof. Matthew Bellgard |
| Exploring possibilities of adopting similar strategies in Indian context |
| Open-floor discussions (with Prof. Alok Bhattacharya) |
| Q&A session |
| Vote of thanks and a group photograph |
For any questions or clarifications, please reach out
Dr. Anjali Taneja,Â
Associate Director,Â
Science Policy Initiative,Â
Office of Research and Development
Ashoka University
Email:Â anjali.taneja@ashoka.edu.in.Â
For more details about this joint initiative, please click here
