Indousrare

Indousrare An independent nonprofit organization that assists Indian origin rare disease patients worldwide.

🌍 Advancing health equity in rare disease research requires intentional efforts to improve representation, access, and i...
05/06/2026

🌍 Advancing health equity in rare disease research requires intentional efforts to improve representation, access, and inclusion.

This systematic review examines demographic disparities affecting medically underserved populations in rare disease research across the United States and highlights opportunities to build a more inclusive research ecosystem.

Ensuring diverse participation in research is critical to improving diagnosis, expanding access to care, and driving innovation that benefits all rare disease communities.

We are grateful to acknowledge grant support from the Rare Disease Diversity Coalition (RDDC) for supporting this work.

📖 Read the publication:
https://link.springer.com/article/10.1186/s12913-026-14281-z

🌐 Learn more about IndoUSrare:
https://www.indousrare.org/

🧩 What is one step the healthcare and research community can take to make rare disease research more inclusive?

🌍 IndoUSrare is pleased to share that Harsha Rajasimha, Our Founder & Executive Chairman, will be attending the World Or...
04/06/2026

🌍 IndoUSrare is pleased to share that Harsha Rajasimha, Our Founder & Executive Chairman, will be attending the World Orphan Drug Congress USA 2026, one of the leading global events focused on advancing innovation, collaboration, and progress in rare disease care.

The event brings together leaders from healthcare, biotech, research, industry, and patient advocacy to exchange insights and explore opportunities to improve outcomes for rare disease communities worldwide.

📅 June 9–11, 2026
📍 Boston, MA

🎟️ Save 20% on registration with our Partner Code: IUS20

🔗 Register here:
https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm

🌐 Learn more about IndoUSrare:
https://indousrare.org/

🤝 Interested in connecting with Harsha Rajasimha before the event?
Schedule a 15-minute conversation:
https://jeevatrials.com/appointment/

03/06/2026

Access to rare disease care and clinical research should not be limited by geography.

At the Indo US Bridging RARE Summit 2025, Sara Tylosky, CEO of Pharmacom Global, shares why expanding rare disease research into emerging and underserved regions is critical to reaching more patients and improving access to potential treatments.

Drawing from her work across Latin America, Sarah discusses the opportunities and challenges of building a more inclusive global clinical research ecosystem—one that brings innovation closer to the communities that need it most.

👉 Watch the full conversation here: https://youtu.be/4X4MJyxBs8I?si=GBcicFBJEASawho-

🌐 Learn more: https://www.indousrare.org/

🌍 IndoUSrare is excited to announce that registrations are now open for the SIAMG–IndoUS Bridging RARE Summit 2026!🎟️ Ta...
03/06/2026

🌍 IndoUSrare is excited to announce that registrations are now open for the SIAMG–IndoUS Bridging RARE Summit 2026!

🎟️ Take advantage of early bird registration and join a global community advancing rare disease research, diagnostics, innovation, advocacy, and patient care.

👉 Register here:
https://www.siamg2026bangalore.com/indous-rare-summit.html

The summit will bring together researchers, clinicians, healthcare professionals, patient advocates, and industry leaders for collaboration, knowledge exchange, and discussions focused on shaping the future of rare disease care.

📅 December 10–13, 2026
📍 Narayana Health City, Bengaluru

🌐 Learn more:
https://www.indousrare.org/siamg/

💬 What rare disease topic would you most like to see discussed at this year's summit?

For many families, the hardest part of a rare disease journey isn't treatment, it's finding answers. Years of uncertaint...
02/06/2026

For many families, the hardest part of a rare disease journey isn't treatment, it's finding answers.

Years of uncertainty, inconclusive tests, and navigating a fragmented healthcare system can leave patients and caregivers searching for the next step.

In our blog, we explore how advocacy organizations can help bridge critical gaps in care through patient navigation, research collaboration, and community support, helping individuals move closer to answers and the resources they need.

📖 Read the full blog: https://www.indousrare.org/blog/from-symptoms-to-solutions-organizations-advancing-undiagnosed-care/

💙 Because every patient deserves answers, support, and a path forward.

💡 Explore more initiatives, research, and advocacy efforts from IndoUSrare:
https://www.indousrare.org/

📅 Save the DateAdvancing rare and mitochondrial disease care requires more than innovation—it requires collaboration, sh...
02/06/2026

📅 Save the Date

Advancing rare and mitochondrial disease care requires more than innovation—it requires collaboration, shared knowledge, and a commitment to improving patient outcomes.

Join leading clinicians, researchers, healthcare professionals, and advocates at the 12th Annual Conference of the Society for Mitochondrial Research and Medicine (SMRM) – India, hosted in collaboration with SMRM, NIMHANS, and IndoUSrare.

Over three days, the conference will bring together experts from across disciplines to exchange insights, discuss emerging developments, foster research collaborations, and explore new opportunities to strengthen care for individuals and families affected by rare and mitochondrial diseases.

Together, we can help drive meaningful progress through science, partnership, and patient-centered innovation.

📍 Bengaluru, India
📅 November 19–21, 2026

👉 Learn more:
https://www.indousrare.org/smrm/

Advancing rare disease care requires more than innovation, it requires collaboration. The IndoUSrare Corporate Alliance ...
01/06/2026

Advancing rare disease care requires more than innovation, it requires collaboration.

The IndoUSrare Corporate Alliance brings together biopharmaceutical, medical device, and life science organizations committed to improving access, accelerating innovation, and supporting better outcomes for rare disease patients worldwide.

Through strategic partnerships and shared expertise, Alliance members help address critical challenges across the rare disease ecosystem while advancing IndoUSrare's mission to educate, empower, and advocate for patients and families.

👉 Learn more about the IndoUSrare Corporate Alliance:
https://www.indousrare.org/programs/corporate-alliance/

🤝 Interested in joining the IndoUSrare Corporate Alliance? Learn more and submit your interest here: http://bit.ly/4nZL0ln

💬 What areas of collaboration do you believe can have the greatest impact on rare disease patients globally?

🌍 Connecting Global Voices to Advance Rare Disease Impact Save the date for the SIAMG–IndoUS Bridging RARE Summit 2026, ...
01/06/2026

🌍 Connecting Global Voices to Advance Rare Disease Impact

Save the date for the SIAMG–IndoUS Bridging RARE Summit 2026, a unique gathering of researchers, healthcare professionals, patient advocates, industry representatives, and rare disease communities united by a shared goal: improving outcomes for those affected by rare diseases.

The summit will foster meaningful dialogue, encourage cross-sector collaboration, and spotlight opportunities to advance research, diagnostics, patient support, and access to care. By bringing together diverse perspectives, we can help accelerate progress across the rare disease landscape.

📍 Narayana Health City, Bengaluru
📅 December 13, 2026

✨ Building partnerships, sharing knowledge, and driving action for a stronger rare disease future.

🔗 Learn more: https://www.indousrare.org/siamg/

The journey to a rare disease diagnosis is often longer and more complex than many people realize.For patients and famil...
29/05/2026

The journey to a rare disease diagnosis is often longer and more complex than many people realize.

For patients and families, delayed diagnosis can mean years of uncertainty, multiple specialist visits, and missed opportunities for timely care and support.

How much do you know about the realities of the rare disease diagnostic journey?

🧩 Take our poll below and test your knowledge.

👉 Looking for guidance on navigating a rare disease or undiagnosed condition? Learn more about the IndoUSrare Patient Concierge:
https://www.indousrare.org/programs/patient-concierge/

📝 Need support or have questions about a rare disease journey? Submit a request through our Patient Concierge Form:
https://indousrare.jeevatrials.com/DD82B44AE31944809EE51AA2D98D4099/studyParticipant/survey/participant/7ea1db46-9158-40bd-a45c-93b4cb665f11

IndoUSrare is excited to share that Harsha Rajasimha, Our Founder & Executive Chairman, will be attending the World Orph...
29/05/2026

IndoUSrare is excited to share that Harsha Rajasimha, Our Founder & Executive Chairman, will be attending the World Orphan Drug Congress USA 2026 — bringing together global leaders across healthcare, biotech, research, and patient advocacy to help shape the future of rare disease care.

At IndoUSrare, we remain committed to amplifying patient voices, fostering global partnerships, and supporting initiatives that advance rare disease awareness, research, and access to care.

📅 June 9–11, 2026
📍 Boston, MA

🎟️ Save 20% on registration with our Partner Code: IUS20

🔗 Register here:
https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm

🌐 Learn more about IndoUSrare:
https://indousrare.org/

🤝 Interested in connecting with Harsha Rajasimha before the event?
Schedule a 15-minute conversation:
https://jeevatrials.com/appointment/

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