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The Indo-US Bridging RARE Summit 2024 took place in New Delhi, India from November 16 to November 18. The Summit saw key speakers from India and the US discuss various aspects of rare diseases, orphan drug clinical trials and diversity, equity and inclusion for orphan drugs.
The Summit was hosted by the Indo-US Organization for Rare Diseases and the All India Institute of Medical Sciences, New Delhi. The Summit had various themes. Some of them were cross-border patient engagement, orphan drug clinical trials, digitisation of rare diseases and regulatory pathways for orphan drugs. The key purpose of the summit was to turn rare diseases into rarely-seen diseases. Rare diseases affect millions globally, yet each patient's journey is often one of isolation and uncertainty. The Summit brought together stakeholders to deliberate upon how to turn isolation into inclusion, with the heart of the Mission being cross-border collaboration. The Summit aimed at pooling resources and knowledge to accelerate the discovery of treatments and cures which will touch lives around the world. The Summit underscored PM Modi's leadership which has allowed India to make transformative strides in healthcare and digital innovation to address rare diseases. It noted the Government of India launching the National Policy for Rare Diseases (NPRD), in March 2021 to support rare disease patients. As part of this mission, the Indo US Bridging RARE Summit 2024, identified and promoted 12 Centres of Excellence for rare diseases that span across India, established 5 Nidan Kendras for genetic testing and counselling and gave individuals financial assistance of up to INR 50 lakh for treatment at designated Centres of Excellence (CoEs). The Summit noted that a vital aspect of its mission is connecting with patients and their families. It also observed that India's vast and genetically diverse population provides a rich resource for understanding various diseases and developing targeted treatments. By involving patients from different regions and backgrounds, India can contribute to a more comprehensive global health dataset. The Summit noted that India can collaborate with international research institutions to share insights and co-develop patient engagement strategies that are culturally sensitive and globally relevant. India and the United States, two nations rich in diversity and innovation, present unique opportunities when our healthcare pathways converge. On the issue of the development of orphan drugs, it was noted that the path to developing them is fraught with challenges, from funding to regulatory hurdles. However, by collaborating across borders, we can streamline clinical trials and navigate regulatory pathways more efficiently. The Summit observed that addressing rare diseases is like mapping uncharted territory; every discovery lights the path forward, but true progress requires exploration and resilience. Hence, by coming together, we can traverse the distance, overcome the obstacles, and reach a future where rare diseases are not a life sentence but a conquerable challenge. (ANI)
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