by Ravi Shankar
Bangluru : For International Rare Disease Day this year, Ashoka University and the Indian Institute of Science (IISC) are hosting webinars on February 19 and February 20.
The first webinar will look into the representation of rare diseases (RDs) in the health agenda and policy of India. Panelists will answer questions on whether rare diseases receive the same level of representation that common disease get in India’s health agendas and policies in the public and private sectors and how equity can be achieved when representing rare diseases in health systems, the private sector and public health programs.
The second webinar will focus on the topic of India’s rare diseases registry mechanism. The panelists will also discuss alternate methods on how to strengthen the health policy agenda in India, what current status of the National Registry of Rare Diseases is and how it too can be strengthened.
The panelists for the first webinar are Dr. Ratna Devi, the chair of the board of International Alliance of Patients’ Organization, Dr. Arjun Singh, the national advisor of the Rashtriya Bal Swasthya Karyakram (RBSK), Dr. Narendra Chirmule, the CEO of Symphony Tech Biologics and former Head of Research and Development of Biocon Limited and Dr. Prasanth Srinivas, the assistant research director and health equity cluster lead in the Institute of Public Health.
The panelists for the second webinar are Prof. Matthew Bellgard, the Director of eResearch and Division of Research at Queensland University of Technology, Prof. Alok Bhattacharya, the
Professor and Head of the Biology Department at Ashoka University, Dr. Reeta Rasaily,
Former Scientist of Indian Council of Medical Research and Programme Officer for Rare Disease Registry, Dr. Sudha Bhattacharya, Indian National Science Academy Senior Scientist from Ashoka University and Dr. Deepa Bhat, Genetic Counselor and Associate Professor for JSS Medical College.
Registration for both sessions can be done using the link below and a Zoom account is required to attend both webinars. The first session begins at 4 P.M. on February 19 and the second session begins at 9:30 A.M. on February 20.
Register here: https://dstcpriisc.org/2022/02/14/rare-diseases-in-public-health/
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