Attention Educators: Your Input Matters for Rare Disease Awareness! Indousrare is gathering insights from teachers across India to enhance awareness and resources for rare diseases. Your perspective can drive meaningful change! ?? Take the survey: https://buff.ly/4feGTvP ?? Explore more: https://buff.ly/4fhvCef Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) #RareDiseases #EducatorInsights #AwarenessMatters #IndoUSrare
Indo US Organization for Rare Diseases (IndoUSrare)
医院和医疗保健
Herndon,VA 3,543 位关注者
Accelerating therapies for rare diseases by fostering cross-border collaborations, clinical trials, & data sharing.
关于我们
Indo US Organization for rare diseases (IndoUSrare) is an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India, & globally with a vision to build collaborative highway-bridges between the west & the east to accelerate research & development of diagnostics & therapies through education, advocacy, research, & grants. IndoUSrare serves as a gateway to the highway-bridges between the USA, & the Indian subcontinent to accelerate research & development of Diagnostics, Drugs, Devices, Biologics, & Therapeutics for rare diseases. The USA is the largest funder of biomedical research with a forward-looking regulatory framework for innovative new medicines including cell & gene therapies. India is the largest democracy with a genetically diverse population of over 1.3 Billion people. Yet, India accounts for less than 1% of the global clinical research footprint. IndoUSrare will address this gap through enabling education, awareness, advocacy, fostering research collaborations & patient engagement in global clinical trials. Our Board of Directors: Anish Bhatnagar, M.D., Soleno Therapeutics Inc Frank Sasinowski, MS, MPH, JD, Regulatory Attorney, Hyman Phelps & McNamara, P.C. & Vice-chair of EveryLife Foundation for rare diseases. Harsha K Rajasimha, Ph.D. Founder and Chairman Ms. Juhi Naithani, MBA, Principal, bGlobal Consulting Narayanan Govindarajan, MS, UWorld Reena Kartha, M.S., Ph.D., Center for Orphan Drug Research, University of Minnesota Advisors: Stephen Groft, Pharm.D., Board Director of ICORD, Retired Director, NIH, Bethesda, MD Akkaraju Sarma, MD, Ph.D., FAAFP, Ellis Island Medal of Honor 2016 Recipient, Pennsylvania Resident Preveen Ramamoorthy, Ph.D., Executive Director, IAVI Rajesh Gooty, President, Lead America Inc. Ravi Mistry, M.S, MBA, Leader, Entrepreneur, Angel investor, Educator Team Members: Srinivas Seshadri, Director, Roarforrare, SFBayarea
- 网站
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www.indousrare.org
Indo US Organization for Rare Diseases (IndoUSrare)的外部链接
- 所属行业
- 医院和医疗保健
- 规模
- 11-50 人
- 总部
- Herndon,VA
- 类型
- 非营利机构
- 创立
- 2019
- 领域
- biotechnology、gene therapy、cell therapy、clinical trials、rare diseases、orphan drugs、clinical research、patient advocacy、Indian subcontinent、India、USA、East and West、Collaborative、Bridges、Highway-Bridges、Collaborations、pharmaceuticals、Market access、Sponsors、CROs、Sites、Policy、Regulatory、rare disease、Global collaboration和cross-border
地点
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主要
US,VA,Herndon
Indo US Organization for Rare Diseases (IndoUSrare)员工
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Narayanan Govindarajan
Tech Leader & Rare Diseases Patient Advocate
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Harsha K Rajasimha
Revolutionizing Clinical Trials with AI Powered Patient-Centric Software Solutions | #BridgingRare
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Padma Rammoorthy
Founder at Pledze LLC
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Nisha Venugopal
Associate Director at Indo US Organization for Rare Diseases leading Patient-Focused Programs, Operations|Scientist| Rare Disease Patient Advocate|…
动态
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At Indo US Organization for Rare Diseases (IndoUSrare), we recognize both the progress and the challenges in India’s journey toward equitable access to rare disease therapies. Policy advancements like the NPRD 2021 and initiatives supporting local manufacturing bring hope. Yet, funding gaps, high treatment costs, and legal hurdles limit access for patients in urgent need. ? We believe it’s time for collaborative action—government, industry, and communities working together—to ensure sustainable solutions for rare disease patients in India and beyond. ? Read More: https://lnkd.in/gq4wgQev ? Because every life matters. Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal?Ramya T karur Michelle Romero ? #RareDiseaseIndia #IndoUSrare #AccessForAll #GeneTherapy #RareButNotAlone #HopeForRareDiseases #GlobalHealthEquity
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On Rare Disease Day 2025, Indo US Organization for Rare Diseases (IndoUSrare) stands with the global community, building on 42 years of progress powered by the Orphan Drug Act. Despite challenges, we remain committed to advancing research, access, and collaboration across borders. ?????? ? Read More: https://lnkd.in/g6Ymb89T ? To further discussions on these critical issues and foster collaborations to drive progress in rare disease research and advocacy, IndoUSrare invites stakeholders to the IndoUS Bridging RARE Summit | Nov 3-4, 2025. Further Details: https://lnkd.in/gTAZ_U5r Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal?Ramya T karur Michelle Romero ? #RareDiseaseDay #IndoUSrare #BridgingRARE #OrphanDrugAc
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Urgent Appeal to Save 13-Year-Old Daivik is fighting a rare, life-threatening infection. He has been on the ventilator for 20 days, and his condition is critical. His family is struggling to meet the overwhelming medical expenses. ? As a community, let's come together and help save this young life. Every contribution, no matter how small, can make a huge difference. ?? ? ??? Donate Now: https://lnkd.in/gU5nvn-M ? If you’re unable to donate, please share this message to help reach more hearts. Together, we can give Daivik a fighting chance. Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal?Ramya T karur Kruti Varshney Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) ? #IndoUSrare #CommunitySupport #DonateNow #RareDiseaseAwareness #ActOfKindness #TogetherWeCan
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Highlights from the Indo US Bridging RARE Summit 2024 ??? A powerful gathering of global experts, healthcare professionals, and advocates, united in their mission to bridge gaps in rare disease awareness, research, and collaboration. These moments capture the spirit of connection, knowledge-sharing, and hope that defined the summit. ???? ?? Explore the full gallery here: https://lnkd.in/gzTUWy8U Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal?Ramya T karur Kruti Varshney Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) #bridgingrare #RareDiseaseAwareness #GlobalHealth #SummitHighlights #bridge4rare #roar4rare
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Indo US Organization for Rare Diseases (IndoUSrare)转发了
#Congress is considering cutting critical funding to #NIH and #FDA, two institutions essential for researching and approving new #RareDisease treatments. Ask your representatives to protect this funding, here: https://lnkd.in/eS58MV3M With less than 5% of #RareDiseases having approved treatments, now is not the time to stop investing in this work. Thank you for using your voice!
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?? Missed our Rare Disease Day fireside chat? Don’t worry—we’ve got you covered! ??? Catch an insightful conversation with Dr. Madhulika Kabra, Harsha K Rajasimha, Aisling Finn, and Dr. Kruti Varshney as they discuss the challenges, breakthroughs, and resilience of the rare disease community. ?? Let’s continue to raise awareness, advocate for change, and support those impacted by rare diseases. ?? Watch the full recording now on YouTube! https://lnkd.in/gKBDQM5t Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) AIIMS (All India Institute of Medical Sciences, New Delhi) #IndoUSrare #RareDiseaseDay #RaisingAwareness #StrongerTogether #RareButNotAlone?
Webinar on Rare Disease Day @indousrare
https://www.youtube.com/
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Today, on 10th March, World Epilepsy Day, we at Indo US Organization for Rare Diseases (IndoUSrare) stand with those living with epilepsy, their families, and caregivers. ??? Epilepsy isn’t just about seizures—it’s about the challenges, misconceptions, and the strength it takes to navigate everyday life. Too often, people face stigma and a lack of understanding. But knowledge is power, and support is strength—together, we can change the narrative. Let’s break the silence, spread awareness, and build a world where those with epilepsy get the care, respect, and opportunities they deserve. ?? Share this to show your support. Every voice matters! Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal?Ramya T karur Michelle Romero #IndoUSrare #WorldEpilepsyDay #BreakTheStigma #SupportMatters #YouAreNotAlone
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Become a driving force for change in the rare disease community by joining the Indo US Organization for Rare Diseases (IndoUSrare) Corporate Alliance today! Together, we can foster innovation and ensure global access to life-saving treatments. By collaborating with top industry leaders, we guarantee that essential therapies reach patients around the world. Let’s work together to empower every patient, everywhere. Sign up now: https://lnkd.in/gNPgg4w2 Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Kruti Varshney #CorporateAlliance #IndoUSrare #RareDisease #RareDiseaseAwareness #CorporateAllianceProgram
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Mark your calendars! The Indo US Bridging RARE Summit 2025 is set to take place on November 3-4, 2025, at the Hylton Performing Arts Center, George Mason University, Manassas, VA. Indo US Bridging RARE Summit 2024 was successfully conducted in the presence of esteemed delegates, fostering valuable discussions and collaborations. This year, we anticipate even more impactful engagements, driving progress in rare disease research, policy, and innovation. We look forward to seeing you there! Stay tuned for more details. https://buff.ly/4aGUWs9 Visit the 2024 Summit gallery to have glimpse of the recent session here: https://buff.ly/4gEjHI1 Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Kruti Varshney Indo US Organization for Rare Diseases (IndoUSrare) #BridgingRARE #IndoUSrare #bridge4rare #roar4rare #patientadvocacy #rarediseases #RDDC2025
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