Join us as Dorothea C. Lantz shares her inspiring journey at the Indo US Bridging RARE Summit 2023! In this insightful talk, she delves into her connection with IndoUSrare and the latest breakthroughs in Prader-Willi Syndrome (PWS) research. She also highlights her advocacy efforts with PWSA, offering a roadmap to unite the global PWS community. Check out our conversation with other speakers from 2023 Summit: https://lnkd.in/gGqaPT7q 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 Beyond the Diagnosis #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #BridgingRARE #IndoUSrare #bridge4rare #praderwillisyndrome #PWS
Indo US Organization for Rare Diseases (IndoUSrare)
Hospitals and Health Care
Herndon, VA 3,409 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
Revolutionizing Clinical Trials with 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|…
Updates
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🎉🎂 Happy Birthday, Frank Sasinowski! 🎂🎉 Congratulations on another wonderful year! Your unwavering dedication and leadership as a Board Director at Indo US Organization for Rare Diseases (IndoUSrare) inspire us all. May the year ahead be filled with even greater achievements, happiness, and success. Enjoy your special day to the fullest—you truly deserve it! 🌟 Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Michelle Romero #IndoUSrare #HappyBirthday #BirthdayCelebration #InspiringLeader #WishingYouSuccess
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We’re pleased to welcome Michelle Romero, MS as our new Director of Development and Partnerships. She will drive impactful initiatives like #CorporateAlliance & #PatientAlliance programs, and the upcoming Indo US Bridging RARE Summit 2025 to new heights. Her expertise promises to take our mission to the next level! Welcome aboard, Michelle – here’s to a remarkable journey together! 🌟 Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #IndoUSrare #BridgingRare #Summit2025 #RareDiseases #PatientConcierge
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🌟 Reminder for the Rare Disease Community! 🌟 Join Indo US Organization for Rare Diseases (IndoUSrare), Cleveland Clinic, and The Marfan Foundation on February 11, 2025, for a webinar on heart health for those affected by Marfan syndrome. Experts like Dr. Melind Desai and Dr. Adam Haniff will cover vital topics on medications, imaging, surgeries, and physical activity. Don't miss this opportunity to learn from top specialists and stay tuned for more upcoming rare disease webinars! 👉 Register Now: https://buff.ly/4imMWBn Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S #MarfanSyndrome #IndoUSrare #HeartHealth #TheMarfanFoundation #PatientEducation #RareDiseases #PatientAdvocacy
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🌍 Rare diseases can feel isolating, but knowledge bridges gaps! IndoUSrare's webinars connect patients, caregivers, and experts across the globe—empowering communities, driving advocacy, and fostering support. From Ayurgenomics to patient success stories, we’re bringing rare disease education to the forefront. Read more from this blog: https://buff.ly/4jdmzxW #RareDiseaseAwareness #PatientEducation #IndoUSrare #Ayurgenomics #BridgingRare #RareDiseaseAdvocacy #WebinarForRare
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💙 Thank You for Supporting IndoUSrare! 💙 Your incredible support is making a difference in the lives of those affected by rare diseases. But our work isn’t done yet! Every contribution helps drive progress, bringing us closer to new breakthroughs and improved care. Let’s continue this journey together—make an impact by donating today: 👉 https://buff.ly/3Q0KYK2 #IndoUSrare #GivingTuesday #RareDiseaseAwareness #SupportPatients #Bridge4Rare #ROAR4Rare #BridgingRare
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IndoUSrare, Cleveland Clinic, and The Marfan Foundation are hosting a learning session on February 11, 2025, for individuals and families affected by Marfan syndrome. Expert speakers, including Dr. Melind Desai, Dr. Vidyasagar Kalahasti, Dr. Siddharth Prakesh, Dr. Ibraham Sultan, and Dr. Adam Haniff, will discuss heart-related concerns, covering medications, imaging, surgeries, and physical activity. Don’t miss this chance to hear from leading specialists. 👉 Register Here: https://buff.ly/4imMWBn #MarfanSyndrome #IndoUSrare #HeartHealth #TheMarfanFoundation #PatientEducation #RareDiseases #AortaCare #PatientAdvocacy
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🌟 Reflecting on 2024 – A Year of Impact! 🌟 Thank you for being part of Indo US Organization for Rare Diseases (IndoUSrare)’s journey this year. Your support drives real change for rare disease patients. Let’s keep the momentum going in 2025! 💙 Consider making a difference today – donate here: 🔗 www.indousrare.org/donate/ #DonateNow #IndoUSrare #RareDiseaseAdvocacy #SupportRarePatients #RareDiseaseAwareness
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Indo US Organization for Rare Diseases (IndoUSrare) reposted this
We are thrilled to kick off the new year at IndoUSrare by announcing and welcoming Michelle Romero as the Director of Development and Partnerships at the Indo US Organization for Rare Diseases (IndoUSrare). In this role, Michelle will work with all of us to help make the Indo US #BridgingRare #Summit 2025 more successful than in previous years, scale the organizational programs such as #CorporateAlliance #PatientAlliance #PatientConcierge to new heights, and drive operational efficiency! We had a great kickoff call this Sunday morning! Michelle got introduced to our organization only months ago (Thank you Lara D'Antonio) and she made a trip to New Delhi for the 2024 Summit at short notice as a speaking faculty. We are so lucky to have the collaboration and support from empathetic and caring leaders in this global village of #rarediseases #orphandrugs #patientadvocacy #IndoUSrare #Bridgingrare Go team Indo US Organization for Rare Diseases (IndoUSrare)! Narayanan Govindarajan Reena Kartha Dr. Mathew T. Thomas Juhi Naithani Anish Bhatnagar Nisha Venugopal Frank Sasinowski Ramya T karur Saundarya M S Lavanyaa Manjunatha, PhD 2025 is promising!!!
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IndoUSrare, Cleveland Clinic, and The Marfan Foundation are hosting a crucial webinar on February 11, 2025, for individuals impacted by Marfan syndrome. Join expert speakers as they discuss heart-related topics, including medications, imaging, surgical options, and physical activity recommendations. Don't miss out—register now: https://buff.ly/4imMWBn #MarfanSyndrome #IndoUSrare #MarfanFoundation #RareDiseases #PatientAdvocacy #MarfanAwareness