India-US Seek To Advance Collaboration For Rare Diseases

NEW DELHI (ANI) – The Indo-US Bridging RARE summit 2024 took place here from November 16 to 18. The event featured key speakers from both countries, discussing crucial topics such as rare diseases, orphan drug clinical trials, and diversity, equity, and inclusion in orphan drug development.

Hosted by the Indo-US Organization for Rare Diseases and the All-India Institute of Medical Sciences, New Delhi, the summit covered various themes, including cross-border patient engagement, digitization of rare diseases, orphan drug clinical trials, and regulatory pathways for orphan drugs.

The summit’s main goal was to transform rare diseases from being “rarely seen” to being more recognized and treated. Although rare diseases impact millions of people globally, each patient’s journey is often marked by isolation and uncertainty. The summit focused on how to turn this isolation into inclusion, with an emphasis on cross-border collaboration.

By pooling resources and knowledge, the summit aimed to accelerate the discovery of treatments and cures that will positively impact lives worldwide. Notably, it identified and promoted 12 Centers of Excellence for rare diseases across India, and established five Nidan Kendras for genetic testing and counseling.

A key takeaway from the summit was the importance of connecting patients and their families. It also highlighted how India’s vast, genetically diverse population serves as a valuable resource for understanding various rare diseases and developing targeted treatments. By involving patients from diverse regions and backgrounds, India can contribute significantly to a more comprehensive global health dataset, was the conclusion.