Indo-US Bridging RARE Summit 2024: A Collaborative Effort to Tackle Rare Diseases
Indo-US Bridging RARE Summit 2024: A Collaborative Effort to Tackle Rare Diseases
The Indo-US Bridging RARE Summit 2024 was held in New Delhi, India, from November 16 to November 18. This important event brought together experts from India and the United States to discuss rare diseases, orphan drug clinical trials, and the importance of diversity, equity, and inclusion in this field.
Key Themes and Goals
The Summit, hosted by the Indo-US Organization for Rare Diseases and the All India Institute of Medical Sciences, focused on several themes, including cross-border patient engagement, digitization of rare diseases, and regulatory pathways for orphan drugs. The main goal was to transform rare diseases into rarely-seen diseases by fostering collaboration and inclusion.
India's Role and Initiatives
The Summit highlighted India's progress in healthcare under PM Modi's leadership, including the National Policy for Rare Diseases launched in March 2021. This policy supports rare disease patients by establishing 12 Centres of Excellence and 5 Nidan Kendras for genetic testing and counseling, along with financial assistance for treatment.
Global Collaboration
India's diverse population offers a valuable resource for understanding diseases and developing treatments. By collaborating with international research institutions, India aims to create culturally sensitive and globally relevant patient engagement strategies.
Challenges and Opportunities
The development of orphan drugs faces challenges like funding and regulatory hurdles. However, cross-border collaboration can streamline clinical trials and improve regulatory processes. The Summit emphasized that addressing rare diseases requires exploration and resilience, aiming for a future where these diseases are conquerable challenges.
Doubts Revealed
Indo-US Bridging RARE Summit
This is a meeting between India and the United States to discuss and find solutions for rare diseases. 'RARE' stands for Rare Diseases, which are illnesses that affect a small number of people.
Rare Diseases
These are illnesses that affect a very small number of people. Because they are so uncommon, they often don't get as much attention or research as more common diseases.
Orphan Drug Trials
These are tests for medicines that are made to treat rare diseases. 'Orphan drugs' are called so because they are developed for conditions that are not common, and thus, they don't have a large market.
Inclusion
In this context, inclusion means making sure that everyone, especially those with rare diseases, is considered and involved in healthcare decisions and treatments.
AIIMS
AIIMS stands for All India Institute of Medical Sciences. It is a group of public medical colleges in India known for providing high-quality medical education and healthcare.
National Policy for Rare Diseases
This is a plan by the Indian government to help people with rare diseases. It includes ways to improve diagnosis, treatment, and support for those affected.
PM Modi
PM Modi refers to Narendra Modi, the Prime Minister of India. He is the leader of the Indian government and has been working on improving healthcare in the country.
Global Collaboration
This means countries around the world working together. In this case, it refers to India and the US teaming up to find solutions for rare diseases.
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