Indousrare

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

Forty-two years ago, a landmark policy changed the future of rare disease drug development. Today, the next challenge is...
10/08/2026

Forty-two years ago, a landmark policy changed the future of rare disease drug development.

Today, the next challenge isn't creating more breakthroughs, it's making sure those breakthroughs reach every patient who needs them.

Our latest blog explores how the legacy of the Orphan Drug Act extends beyond legislation and why patient organizations, cross-border collaboration, accessible clinical trials, and stronger care networks are essential to turning scientific progress into real-world impact.

At IndoUSrare, we believe innovation is only meaningful when it improves lives.

📖 Read the full blog and discover how we're helping bridge the gap between policy, research, and patient care.
🔗 https://www.indousrare.org/blog/rare-disease-roadmap-insights-from-42-years-of-the-orphan-drug-act/
🌐 Learn more about IndoUSrare and our work: https://www.indousrare.org/

🌍 Registrations are now open for the SIAMG–IndoUS Bridging RARE Summit 2026! 🎟️ Early bird registration is now available...
10/08/2026

🌍 Registrations are now open for the SIAMG–IndoUS Bridging RARE Summit 2026!

🎟️ Early bird registration is now available for one of the leading global gatherings dedicated to advancing rare disease research, diagnosis, innovation, patient advocacy, and care.

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

The summit will bring together researchers, clinicians, healthcare professionals, patient advocates, industry leaders, and policymakers from around the world to exchange knowledge, foster meaningful collaborations, and explore solutions that can improve the lives of individuals and families living with rare diseases.

📅 December 10–13, 2026
📍 Shangri-La Bengaluru

From scientific breakthroughs and emerging technologies to patient-centered care and cross-border partnerships, the SIAMG–IndoUS Bridging RARE Summit 2026 will showcase the ideas and collaborations driving the future of rare disease care.

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

Interested in supporting the next generation of rare disease innovation? Join us as a Pitch4RARE Sponsor and help streng...
07/08/2026

Interested in supporting the next generation of rare disease innovation?

Join us as a Pitch4RARE Sponsor and help strengthen a global platform where innovators connect with researchers, clinicians, investors, industry leaders, and patient advocacy organizations committed to advancing solutions for rare diseases.

Your partnership will help foster meaningful collaboration, support promising innovations, and strengthen the global rare disease ecosystem—bringing innovative ideas closer to the patients and families who need them most.

🔗 Learn more about becoming a Pitch4RARE Sponsor: https://www.indousrare.org/pitch4rare/

If your organization is committed to advancing mitochondrial disease care, we'd like to invite you to join the IndoUSrar...
06/08/2026

If your organization is committed to advancing mitochondrial disease care, we'd like to invite you to join the IndoUSrare Corporate Alliance.

As IndoUSrare's focus this year centers on mitochondrial disease, we're bringing together biopharmaceutical, medical device, diagnostics, and life science companies that share a common goal: improving the lives of people affected by mitochondrial and rare diseases.

Through the Corporate Alliance, industry leaders collaborate with researchers, clinicians, and patient advocates to accelerate research, strengthen the rare disease ecosystem, and expand equitable access to life-changing therapies.

If this mission aligns with your organization's vision, we'd be honored to welcome you as a Corporate Alliance member.

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

📝 Ready to join? Submit your membership application: https://indousrare.jeevatrials.com/DD82B44AE31944809EE51AA2D98D4099/studyParticipant/survey/participant/ca5cd091-60f5-4895-995e-41fa479b7101

Registrations are now open for the 12th Annual Conference of the Society for Mitochondrial Research and Medicine (SMRM) ...
06/08/2026

Registrations are now open for the 12th Annual Conference of the Society for Mitochondrial Research and Medicine (SMRM) – India!

👉 Secure your spot: https://smrm2026.com/registration.php

Hosted by NIMHANS, SMRM, and IndoUSrare, the conference will bring together clinicians, researchers, healthcare professionals, and advocates to share knowledge, strengthen collaborations, and explore the latest advances in mitochondrial and rare disease research.

Together, we'll discuss emerging discoveries, clinical insights, and innovative approaches that can help improve diagnosis, treatment, and patient care for individuals and families affected by mitochondrial and rare diseases.

📍 Bengaluru, India
📅 November 19–21, 2026
🌍 Learn more about the conference: https://www.indousrare.org/smrm/

Florida is taking an important step toward earlier answers for children with rare genetic diseases. 🧬 The newly launched...
05/08/2026

Florida is taking an important step toward earlier answers for children with rare genetic diseases. 🧬

The newly launched Sunshine Genetics Program will use genomic newborn screening to identify hundreds of treatable rare conditions before symptoms appear, with the pilot aiming to screen around 100,000 newborns.

Earlier diagnosis can change the course of a rare disease journey, opening the door to timely treatment, informed decisions, and better support for families.

Progress like this reflects the importance of building a rare disease ecosystem where patients and families can access the information, care, and support they need. That’s a commitment we continue to advance through our work at IndoUSrare.

🔗 Read the full story: https://news.fsu.edu/news/health-medicine/2026/07/10/as-florida-launches-newborn-genetic-screening-program-fsu-institute-leads-statewide-effort-2/

🌐 Explore how IndoUSrare supports the rare disease community: https://www.indousrare.org/

As a special thank-you for joining our webinar, all attendees will receive complimentary access to the eBook Well-being ...
05/08/2026

As a special thank-you for joining our webinar, all attendees will receive complimentary access to the eBook Well-being in Rare Diseases by Julia Gleize, MD and James Levine.

Don't miss this opportunity to learn from experts and add a valuable, rare disease resource to your collection.

Register today and reserve your spot.

🔗 Register here:https://us06web.zoom.us/meeting/register/XcHsiSuGQRyPPrLJsuNQFA
📘 Facebook Event: https://www.facebook.com/events/1372206938410986/
💼 LinkedIn Event: https://www.linkedin.com/event/manage/7480568131715796993/

Hear from Shay Beider, Founder & CEO of Integrative Touch, and Dr. Harsha K. Rajasimha, Founder & Executive Chairman of IndoUSrare, as they share perspectives on holistic well-being, resilience, and the power of community alongside rare disease families from India and the USA.

📅 August 5, 2026
⏰ 8:00 AM PT | 11:00 AM ET | 8:30 PM IST

Learn more about IndoUSrare and our mission to support individuals and families affected by rare diseases: https://www.indousrare.org/



04/08/2026

When access to care remains out of reach, innovation alone cannot change a patient’s reality.

At the Indo US Bridging RARE Summit 2025, Tina Aswani-Omprakash, MPH, CEO & Co-Founder of SAIA and a dedicated patient advocate, shares her perspective on the gaps rare disease patients continue to face.

From timely diagnosis and specialist care to affordable treatment, Tina highlights why patient voices must be part of shaping better care.

Through conversations like these, IndoUSrare brings together patient voices and diverse stakeholders to advance more accessible, patient-centered rare disease care.

▶️ Watch the full conversation on our YouTube channel: https://youtu.be/MsPWQE4oNag
🌐 Learn more about us: https://www.indousrare.org/

💙 Only 1 day to go! Register now for an inspiring fireside chat on wellness, resilience, and life beyond diagnosis with...
04/08/2026

💙 Only 1 day to go!

Register now for an inspiring fireside chat on wellness, resilience, and life beyond diagnosis with the rare disease community.

🔗 https://us06web.zoom.us/meeting/register/XcHsiSuGQRyPPrLJsuNQFA

📘 RSVP on Facebook: https://www.facebook.com/events/1372206938410986/

💼 RSVP on LinkedIn: https://www.linkedin.com/event/manage/7480568131715796993/

Hear from Shay Beider, Founder & CEO of Integrative Touch, a pioneer in integrative healing and compassionate care, and Dr. Harsha K. Rajasimha, Founder & Executive Chairman of IndoUSrare, a global leader in rare disease advocacy and precision medicine.

Together with rare disease families from India and the USA, they'll share perspectives on resilience, holistic well-being, and the power of community in navigating life beyond diagnosis.

📅 August 05, 2026

⏰ 8:00 AM PT | 11:00 AM ET | 8:30 PM IST

Learn more about IndoUSrare and our mission to support individuals and families affected by rare diseases: https://www.indousrare.org/

Spinal Muscular Atrophy (SMA) Awareness Month | August 💙 August is dedicated to raising awareness of SMA, a rare genetic...
03/08/2026

Spinal Muscular Atrophy (SMA) Awareness Month | August 💙

August is dedicated to raising awareness of SMA, a rare genetic condition that affects the motor neurons responsible for muscle movement.

For people living with SMA and their families, understanding the condition is an important part of navigating the journey ahead. Greater awareness can help encourage earlier conversations, informed decisions, and better access to care and support.

At IndoUSrare, our free Patient Concierge Program is designed to help individuals and families navigate this rare disease journey by connecting them with educational resources, expert guidance, advocacy networks, and clinical trial information.

💡 Learn more about our Patient Concierge Program:
https://www.indousrare.org/programs/patient-concierge/

📝 Connect with our Patient Concierge:
https://bit.ly/4o7LYMB

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