Rare Diseases in Public Health

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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. 

February 19, 2022 

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, 

Associate Director, 

Science Policy Initiative, 

Office of Research and Development

Ashoka University

Email:  anjali.taneja@ashoka.edu.in. 

For more details about this joint initiative, please click here

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