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
External link for Indo US Organization for Rare Diseases (IndoUSrare)
Herndon, VA, US
Indo US Organization for Rare Diseases (IndoUSrare) reposted this
Make in India CAR-T Cells Gene therapy accessible to all patients - Rahul Purwar https://lnkd.in/e9wsXBMp #Bahl #Cancer #CARTcells #GeneTherapy #GSTCouncil #ICMR #OncoDaily #OncologyPatients #Medicine #Health
Indo US Organization for Rare Diseases (IndoUSrare) reposted this
The FDA has released draft guidance to accelerate the approval of drugs for serious conditions, offering faster access to treatments for those with unmet medical needs. Key Points: -Expedites life-saving treatments -Uses early clinical evidence for approvals -Requires follow-up trials to confirm benefits At IMPSN, we advocate for innovations like these that bring hope to rare disease patients worldwide. 🔗https://lnkd.in/dk95RJwx #IMPSN #IMPSNCommunity #RareDiseaseAdvocacy #RareDiseaseCommunity
As we reflect on this year, we want to thank you for your unwavering support in helping those affected by rare diseases. Your dedication makes all the difference. Wishing you a joyful holiday season and a bright, hopeful year ahead. Thank you for being a part of our journey! Want to join us in improving the lives of rare patients? Visit here: https://buff.ly/4iTvZib #SeasonGreetings #HappyHolidays #IndoUSrare #RareDiseaseAdvocacy #PatientSupport #RareDiseaseAwareness #RareDiseases
🌟 2024 Recap: A Year of Progress! 🌟 Thank you to everyone who joined the Indo US Organization for Rare Diseases (IndoUSrare)'s journey this year. Your support, passion, and belief in our mission have been the driving force behind our success. Here’s to making an even greater impact in 2025! 💙 Want to join us in improving the lives of rare patients? Visit here: https://buff.ly/4iTvZib Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S #ThankYou #IndoUSrare #RareDiseaseAdvocacy #RareDiseaseAwareness #RareDiseases
Teacher Survey: Raise Rare Disease Awareness IndoUSrare invites you to share your insights on rare diseases in India. Your input can drive awareness and better resources. 👉 Participate now: https://buff.ly/4feGTvP 🔗 Learn more: https://buff.ly/4fhvCef #RareDiseases #TeacherAwareness #EducationForChange #IndoUSrare
🎉 Wishing a very Happy Birthday to Harsha K Rajasimha, our visionary Founder and Executive Chairman! May this year bring you continued success, happiness, and impactful achievements. 🎂✨ Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #indousrare #happybirthday #birthdaywishes #birthdaycelebration #birthday #Leadership #Inspiration
A heartfelt thank you to Ganesh Sangle, PhD, & Dr. Vamshi Krishna Thamtam for sparking impactful conversations on reducing orphan drug dosages, affordable diagnostics, and biopharma's role in shaping public policy at the Indo US Bridging RARE Summit 2024. Your expertise and passion light the path for innovation and collaboration in rare disease research. We’re inspired and grateful for your invaluable insights! For visuals, please register to login: https://buff.ly/46DlB8g #orphandrugs #diagnostics #biopharma #indousrare #bridge4rare #bridgingrare #roar4rare #publicpolicy #patientadvocacy #indousrareeventday2
🌟 A heartfelt thank you to our incredible panelists—Christina Raj, Saurabh Singh, Nikhil Jayswal, Srijan Mittal, and Nadir Aman—for lending their voices to the realities of rare diseases at the Indo US Bridging RARE Summit 2024. Your insights on patient journeys, caregiving, and challenges were not just enlightening—they were a call to action. For visuals, please register to login: https://buff.ly/46DlB8g #indousrare #bridge4rare #bridgingrare #roar4rare #rarediseases #patientcare #patientvoices #patientadvocacy
Thank you to our Co-Chairs, Dr. SHUBHA PHADKE and Dr. Ashish Gupta, and panelists—Dr. Bhavna Dhingra, Dr. Sankar V. Hariharan, Dr. KULDEEP SINGH, Dr. Sanjeeva GN , and Dr. Prajnya Ranganath—for your thoughtful perspectives on rare disease care in India. Your contributions have added great value to the discussion and inspired meaningful steps toward patient-centered solutions. For visuals, please register to login: 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 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) #bridge4rare #bridgingrare #roar4rare #indousrare #patientadvocacy
Day 3 of the Indo US Bridging RARE Summit 2024 was nothing short of inspiring! 🌟 From insightful panels to heartfelt patient stories, the day showcased the power of collaboration in advancing rare disease research and care. Thank you to all the speakers, sponsors, and attendees for driving impactful conversations and innovation! 💙 For visuals, please register to login: 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 Beyond the Diagnosis #SocietyforIndianAcademyofMedicalGenetics Harsha K Rajasimha Narayanan Govindarajan Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #BridgingRARE #IndoUSRARESummit2024 #bridge4rare #roar4rare #indousrare #patientadvocacy