We're pleased to announce the recipients of the Abbey Meyers Khushi Bridging RARE Award 2024! 🏆 A huge congratulations to Dr. Hasmukh Jain from Tata Memorial Centre and Rahul Purwar from ImmunoACT and Professor at IIT Mumbai. Their outstanding work in rare disease research is inspiring and impactful. Let's celebrate their dedication and commitment to making a difference! To meet the honorees, register now at: https://buff.ly/4aGUWs9 Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #bridge4rare #BridgingRARE #indousrare #roar4rare #CellTherapy
Indo US Organization for Rare Diseases (IndoUSrare)
Hospitals and Health Care
Herndon, VA 2,982 followers
Accelerating therapies for rare diseases by fostering cross-border collaborations, clinical trials, & data sharing.
About us
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
- Website
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www.indousrare.org
External link for Indo US Organization for Rare Diseases (IndoUSrare)
- Industry
- Hospitals and Health Care
- Company size
- 11-50 employees
- Headquarters
- Herndon, VA
- Type
- Nonprofit
- Founded
- 2019
- Specialties
- 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, and cross-border
Locations
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Primary
Herndon, VA, US
Employees at Indo US Organization for Rare Diseases (IndoUSrare)
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Narayanan Govindarajan
Tech Leader & Rare Diseases Patient Advocate
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Harsha K Rajasimha
Human-Centric Software and Turnkey CRO Solutions for Modern Clinical Research | #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|…
Updates
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We are pleased to welcome Jaime Reynolds, MPH, Epidemiologist at the Centers for Disease Control and Prevention, as a speaker at the Indo US Bridging RARE Summit 2024! Join us for an opportunity to engage with her as she shares insights on "Advancing Rare Diseases: Lessons and Case Studies from Neuromuscular Disorders." Stay tuned for more exciting updates: https://buff.ly/4aGUWs9 Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #BridgingRARE #bridge4rare #IndoUSrare #PatientAdvocacy #RareDiseaseAdvocacy
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Indo US Organization for Rare Diseases (IndoUSrare) reposted this
With 100+ speakers already confirmed for our 2025 edition and our conference agenda filling up fast, we’re excited to announce the latest expert speakers who have just joined our incredible lineup: 🎤 Connie Lee, President and Chief Executive Officer, Alliance to Cure Cavernous Malformation 🎤 Craig Martin, President, RithmHealth; CEO, Orphan Therapeutics Accelerator 🎤 Amy Gray, CEO, Undiagnosed Diseases Network Foundation (UDNF) 🎤 Jennifer McNary, Founder, One Rare 🎤 Harsha K Rajasimha, Founder and Chairman, Indo US Organization for Rare Diseases (IndoUSrare) 🎤 Jean Swindler, Executive Director, Genetic ALS & FTD: End the Legacy Reserve your seat today at the lowest rate of the year and hear from #WorldOrphanUSA's industry-leading speakers April 22-24 as they bring cutting-edge insights into rare disease drug development, regulatory pathways, patient advocacy, and more. 🎟️ Book with code 𝐅𝐈𝐑𝐒𝐓𝟏𝟎𝟎 today for 𝟕𝟎% 𝐨𝐟𝐟 your ticket (saving you $2,410) – https://lnkd.in/eaz-cxwZ *𝘖𝘧𝘧𝘦𝘳 𝘦𝘹𝘱𝘪𝘳𝘦𝘴 𝘢𝘵 𝘮𝘪𝘥𝘯𝘪𝘨𝘩𝘵 𝘵𝘰𝘮𝘰𝘳𝘳𝘰𝘸 - 𝘍𝘳𝘪𝘥𝘢𝘺, 𝘖𝘤𝘵𝘰𝘣𝘦𝘳 11 🎟️ 𝐅𝐑𝐄𝐄 𝐩𝐚𝐬𝐬𝐞𝐬 for patient advocacy groups and hospitals here – https://lnkd.in/ezqcD2G4 Take on the #WorldOrphanUSA stage and 𝐬𝐡𝐚𝐫𝐞 𝐲𝐨𝐮𝐫 𝐞𝐱𝐩𝐞𝐫𝐭𝐢𝐬𝐞! 🗣️ Inquire to speak today – https://lnkd.in/ev8pfujX #RareDisease #OrphanDrugs #DrugDevelopment #PatientAdvocacy
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🌍💚 On this World Mental Health Day, let's not forget the unique mental health challenges faced by rare disease patients. Living with a rare disease can be an emotional journey filled with uncertainty, isolation, and resilience. At Indo US Organization for Rare Diseases (IndoUSrare), we are committed to advocating for the mental well-being of patients and caregivers, ensuring they receive the support they need. let's work together to ease out the mental stress for rare disease patients and caregivers. Join us at: https://lnkd.in/gq8_m_-F Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S #WorldMentalHealthDay #SupportRare #CompassionInCare #IndoUSrare #PatientAdvocacy
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We are pleased to announce that James Levine, MD PhD, President, Fondation Ipsen , will join us as a Co-Chair at the Indo US Bridging RARE Summit 2024 for the Pitch4RARE Contest! Register here: https://buff.ly/4aGUWs9 Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #OrphanDrugs #pitch4rare #roar4rare #indousrare #bridgingrare #bridge4rare
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STARTUPS, FOUNDERS, INNOVATORS. Join us at the #PITCH4RARE contest at the Indo US Bridging RARE Summit 2024! Judging panel of senior international leaders from India, France, and the US. Are you addressing unmet needs of patients with rare diseases by developing innovative products, diagnostics, therapies, or digital health solutions? Here is your opportunity to showcase to key stakeholders. Limited startups will be selected to pitch. Register NOW! for Nov 16-18, New Delhi: https://buff.ly/46DlB8g Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance IKP EDEN Fondation Ipsen #SocietyforIndianAcademyofMedicalGenetics James Levine Dr.Dayaprasad G Kulkarni Dr. Ridimaa K. Dr. Priyankana Mukherjee Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #indousrare #innovation #bridge4rare #bridgingrare #Pitch4RARE
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Indo US Organization for Rare Diseases (IndoUSrare) reposted this
We are honored to welcome Dr. Chandra Pemmasani, Minister of State for Rural Development and Communications, as the chief guest for the Bridging RARE Gala and Reception session at the Indo US Bridging RARE Summit 2024. His dedication to rural development and effective communication plays a crucial role in advancing our collective efforts in rare disease advocacy. We look forward to his insights and contributions at this significant event. Register for Gala here: https://buff.ly/46DlB8g Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #GalaNight #CulturalFusion #bridgingrare #bridge4rare #indousrare #roar4rare
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We are honored to welcome Dr. Chandra Pemmasani, Minister of State for Rural Development and Communications, as the chief guest for the Bridging RARE Gala and Reception session at the Indo US Bridging RARE Summit 2024. His dedication to rural development and effective communication plays a crucial role in advancing our collective efforts in rare disease advocacy. We look forward to his insights and contributions at this significant event. Register for Gala here: https://buff.ly/46DlB8g Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #GalaNight #CulturalFusion #bridgingrare #bridge4rare #indousrare #roar4rare
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We had an incredible time at the SCDM Annual Conference in Boston! Our Founder & Executive Chairman, Harsha Karur Rajasimha, Ph.D., shared invaluable insights on clinical trials for rare and complex diseases. Grateful for the amazing connections and discussions on how IndoUSrare is driving innovation in rare disease research. Check out some highlights from the event! #SCDM2024 #RareDiseases #PatientAdvocacy #MeetIndoUSrare
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We’re happy to announce that Fondation Ipsen has joined us as our partner for the Pitch4RARE Contest at the Indo US Bridging RARE Summit 2024! Together, we're empowering innovative ideas in the rare disease space. Stay tuned for more updates and get ready to be inspired! Learn more here: https://buff.ly/4aGUWs9 Centre for Cellular and Molecular Biology BRIC-Centre for DNA Fingerprinting and Diagnostics (CDFD) AIIMS (All India Institute of Medical Sciences, New Delhi) Virginia Bio George Mason University BioHealth Innovation, Inc. BioHealth Capital Region Sir Ganga Ram Hospital Tamahar Trust Aarogya Seva: Global Health Volunteer Alliance #SocietyforIndianAcademyofMedicalGenetics James Levine Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #Innovation #bridgingrare #bridge4rare #roar4rare #Pitch4RARE