Indousrare S Collaborative Approach To Rare Disease Awareness

Received 2022 Apr 18; Accepted 2022 Sep 26; Collection date 2022 Jan-Dec. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed... The inaugural IndoUSrare Annual Conference was held virtually from 29 November to 2 December 2021 and was organized by the Indo US Organization for Rare Diseases (IndoUSrare). The event saw participation from over 250 stakeholders of rare diseases who joined in virtually by audio/video on the Zoom platform from around the world, with a majority of attendees concentrated in the Indian... The conference was held over 4 days from 10:00 a.m. to 12:30 p.m.

Eastern Time on each day, which accommodated participation by speakers and attendees from both the eastern and western hemispheres. The agenda over 4 days holistically covered broad topics of interest to different stakeholder groups such as representatives from organizations working toward policy frameworks for rare diseases or orphan drugs (Days 1, 4), biomedical... In this meeting report, we summarize the key highlights from each day of this conference, with a perspective on future directions encouraging cross-border multistakeholder collaborations to maximize diversity, equity, and inclusion (DEI) in rare... Each day included a keynote lecture on the theme of the day followed by a series of individual speaker presentations and/or a panel discussion. The goal was to understand current barriers and bottlenecks in the rare disease ecosystem. The discussions also helped highlight gaps and identify potential solutions that can be achieved through building multistakeholder collaborations across international borders, which we believe IndoUSrare is uniquely positioned to do with organizational programs such...

The inaugural conference of the then 2+-year-old IndoUSrare organization laid the foundation for ongoing engagement of stakeholders between the two countries – the United States and India. The long-term goal is to scale the conference more broadly and serve as a model for other low- and middle-income countries (LMICs). IndoUSrare held its inaugural Annual Conference from 29 November to 2 December 2021. It was focused on the theme of cross-border collaborations for rare disease drug development, with each day dedicated to a specific patient-focused discussion topic, ranging from patient-led advocacy (Advocacy Day), research (Research Day), rare... The 4-day conference was held in virtual mode and attracted over 250 attendees from across the globe. This meeting report provides the key highlights of the event and summarizes learnings and future directions encouraging cross-border collaborations to increase diversity, equity, and inclusion (DEI) in rare disease research and clinical trials.

Keywords: clinical trials, collaborations, DEI, diversity, meeting report, orphan drugs, patient advocacy, patient engagement When tariffs and trade disputes dominate headlines between the U.S. and India, collaboration in science can feel like an afterthought. Yet one nonprofit is betting that rare disease research may succeed where diplomacy often stalls. IndoUSrare, a U.S.-based patient advocacy and research alliance, has been quietly forging new collaborations across borders. Its mission: make rare disease research a global priority by uniting patient groups, scientists, industry leaders and policymakers from both countries.

And with its Bridging RARE Summit 2025 scheduled for November 2-4, 2025 at George Mason University in Virginia, the organization is preparing to showcase how cooperation in rare disease research could outpace politics. Rare diseases are anything but rare. More than 10,000 conditions affect an estimated 400 million people worldwide, most without approved treatments. For patients, the hurdles are immense: years-long diagnostic odysseys, lack of access to trials, and therapies priced out of reach. India represents both a challenge and an opportunity. The country has a massive, genetically diverse population and a rising biotech sector, yet rare disease infrastructure—diagnostics, registries, and funding—is still in early stages.

The U.S., meanwhile, has strong regulatory frameworks and funding incentives such as the Orphan Drug Act. Together, the two nations represent a powerful but underutilized partnership. To close that gap, IndoUSrare has been developing initiatives that span advocacy, research, and industry engagement: There were 1,985 press releases posted in the last 24 hours and 359,272 in the last 365 days. Rare Disease Day at IndoUSrare - Bridging Nations, Empowering RARE Lives Dr.

Harsha Rajasimha with Jenifer Waldrop at the RDDC RISE Awards ceremony. Dr Rajasimha was conferred the Caregiver RISE Award 2025 Combating Rare Diseases by Fostering Cross Border Collaborations, Data Sharing, and Clinical trials Nisha Venugopal Indo US Organization for Rare Diseases +1 540-239-0465 admin@indousrare.org Visit us on social media: Facebook X LinkedIn Instagram YouTube The Indo U.S. Organization for Rare Diseases (IndoUSrare) has announced new cross-border collaborations to strengthen research, diagnostics, and patient care ahead of its 2025 Bridging RARE Summit, scheduled for Nov.

2-4 at George Mason University’s Hylton Performing Arts Center. The nonprofit, which connects rare disease stakeholders across the United States, India, and beyond, said the efforts aim to provide continuity in care despite rising tariffs, supply chain disruptions, and geopolitical tensions. “Tariffs and tensions make headlines; patients can’t wait,” said Harsha K. Rajasimha, founder and executive chair of IndoUSrare. “Our community is choosing focus over fear—linking investigators, patient groups, and industry partners across borders to reduce time to diagnosis, de-risk trials, and sustain access to care. Quiet collaboration is our superpower.”

IndoUSrare’s pre-summit work emphasizes practical solutions with immediate impact. Key areas include: READ: South Asian Impact Foundation to host 2025 Summit on September 16-17 (September 11, 2025) About Us – Indo-US Organization for Rare Diseases (IndoUSrare) is a non-profit 501(c)(3) tax-exempt organization on a mission to accelerate access to therapies for rare diseases by fostering collaborations between stakeholders in the USA... Bridging gaps in rare disease care by fostering U.S.-India collaborations for increased access to treatments and global clinical trial opportunities. to US FDA and Indian Govt on data sharing and diversity

Building bridges between the USA and India to accelerate rare disease research and access to life-saving therapies. There are several ways to get involved with IndoUSrare, including: Combating Rare Diseases by Fostering Cross-Border Research, Collaborations, Data Sharing, and Clinical Trials Globally Our vision is to educate, empower, and advocate for patients with rare diseases in the US, India, and around the world by building collaborative bridges across regions and communities to ensure broader representation in... Our mission is to help establish and sustain patient-centric education, awareness, training, research, and engagement programs aligned with the FDA’s patient- focused drug development (PFDD) paradigm Founded in 2019 with a group of community leaders with a long history of serving the rare disease community in different capacities.

The group saw the need for global cooperation between the East and the West as a driver of new therapies of the 21st century. Orphan Drugs are largely funded by and developed in the Western world by engaging only 10% of the world’s population. Once approved by the FDA, these treatments are sought by patients globally who may not be able to access or benefit from the drugs designed without being tested on diverse patients representative of the... We saw the need for building collaborative bridges of hope between the Eastern and Western worlds to accelerate discovery and development of novel diagnostics and therapeutics for the global rare disease community.

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