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Bijaya Mishra

My deepest gratitude to the Rare Disease Diversity Coalition (RDDC) for providing me with the scholarship to attend the Indo US Bridging RARE Summit 2023, held at the George Mason University, Arlington, Virginia on the 29th -30th of October, 2023.

My passion to work in the field of Newborn Screening, Rare Diseases and Genetic Diagnostics led to my participation in this Summit.

For me the Indo US Bridging RARE Summit 2023 was a culmination of Pain, Passion, Path and Purpose.

It was an inspiration to witness the stories of rare parents and rare patients who turned their pain into passion and turning themselves into advocates for the rare disorders.

It was an amazing experience and motivation to see the passion that the key stakeholders and passionate leaders who are carving the path to bridge the gap for patients living with rare diseases across the world with specific focus to US and Indian subcontinent.

Keynote speeches from the influential speakers, the innovative speaker sharing their work in the diagnosis, monitoring and treatment of rare diseases, and the thought provoking panel discussions was all in one a power loaded agenda for the Summit. All the sessions in the Summit provided the participants with a holistic approach to the care of rare diseases patients.

The sessions provided an enriching learning experience on overview on how rare diseases patients and caregivers are moving the needle in US and India; what diversity, equity, inclusion and access (DEIA) means to us today; CARE pathways and its differences across geographies; digitalization in context to rare diseases; regulatory pathways for orphan drugs; orphan drugs clinical trials; global launch strategies- emerging markets; and looking ahead- building bridges for rare diseases.

Bridging RARE Celebration was infused with inspiration where influential personalities Dr. William A. Gahl and Dr. Ishwar Chander Verma were awarded with prestigious Abbey Meyers Khusi Bridging RARE Award for their lifetime contributions to building cross-border collaborations for rare diseases, this was followed by celebration and amazing performances.

The Indo US Bridging RARE Summit 2023 for me was about learning, networking, being inspired and being motivated. It has helped me bridge the gap in terms of my knowledge and understanding about the holistic approach towards the care of the rare disease patients.


From one of the presentation in the Summit:

"Turn your PAIN into PASSION; your PASSION into your PATH!" A PATH of PURPOSE...


Looking forward to

Indo US Bridging RARE Summit 2024

Nov 16-18, New Delhi

Post by Rare Disease Diversity Coalition
December 27, 2023