Indo US Organization for Rare Diseases (IndoUSrare)

Your Health, Your Right! This #WorldHealthDay, let’s remember that health is a right, not a privilege. Millions with rare diseases still struggle to access proper diagnosis and care—many from birth. 🌍 WHO’s theme, “Healthy Beginnings, Hopeful Futures,” highlights maternal and newborn health. However, we must also include rare conditions that start before or at birth. 🧬 Early screening, maternal education, and equitable access are key to healthier beginnings for all. Let’s stand for health equity—for every mother, every child, every rare story. Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S

The MVA Society IndoUSrare patient alliance member was founded to connect families, patients, and caregivers affected by MVA Syndrome. With so few known cases, finding support can be challenging—but together, we can change that. Created by parents of a child with MVA Type 1 (BUB1B), the society is dedicated to raising awareness, sharing experiences, and building a strong support network. If you or someone you know is affected, we’d love to connect. Join the MVA Community – You Are Not Alone 💜 📢 Join the movement and support rare disease research!   🔗 Become a member: https://bit.ly/4kYbbqH 📌 Find More Information: 📄 Leaflet & Contact Letter available 🌍 Website: www.mvasociety.org 🤝 Patient Support: Contact IndoUSrare Patient Concierge Platform Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S #Indousrare #AllianceForRare #MVASociety #RareDiseaseAwareness #GeneticDisorders #PatientCare #StrongerTogether

🌍 Uniting for Global Impact! 🌍     At IndoUSrare Corporate Alliance, we are committed to advancing diversity, equity, inclusion, and access in rare disease research and therapies. Our objectives focus on breaking barriers and fostering collaboration to ensure equitable access to life-saving treatments for patients in India, LMICs, and around the world. Together, we can make a difference! 💙 Join- https://bit.ly/4jhlKn6 Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S  #RareDisease #GlobalHealthEquity #IndoUSrare #PatientAdvocacy #HealthcareInnovation #RareDiseaseAwareness #CollaborationForChange

Rare diseases affect over 300 million people worldwide, yet many remain unheard and unsupported. At IndoUSrare, we’re amplifying patient voices, driving research, and creating a supportive community for families facing these unique challenges. 💙 Discover how patient advocacy organizations like ours make a real difference in diagnosis, treatment access, and research. 👉 Read more: https://lnkd.in/g9uZfK_u    🔗 Join the movement. Advocate for change! Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S  #RareDisease #PatientAdvocacy #IndoUSrare #RareDiseaseAwareness #SupportRare #PatientVoicesMatter #HealthcareForAll

At IndoUSrare, we recognize that both autism and rare diseases exist on a diverse spectrum—each individual’s journey is unique. Many rare genetic conditions share connections with autism, reinforcing the need for greater awareness, early diagnosis, inclusive support systems, research, and advocacy. 🌍💙 On World Autism Awareness Day, let’s come together. By fostering awareness, acceptance, research, and advocacy, we can create a world where everyone feels valued and supported. 💙 Join us in making a difference! Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S INDIAN PRADER WILLI SYNDROME ASSOCIATION Project 8p Foundation MLD Foundation CDKL5 UK Allconnect NeuroMusculoskeletal Research Collaborative PPMDC Lysosomal Storage Disorders Support Society (LSDSS) - India NationalATM Pay BharatMD Autoimmune Registry The Marfan Foundation Myositis India FAM177A1 Research Fund COMBINEDBrain SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders Remember The Girls Cure MLD Cure VCP Disease CSNK2A1 Foundation International SCN8A Alliance STXBP1 Foundation #IndoUSrare #WorldAutismAwarenessDay #RareDiseaseAwareness #AutismAndRareDiseases #LightItUpBlue #InclusionMatters #ResearchForRare #AdvocacyMatters #DifferentNotLess

CALL FOR POSTER ABSTRACTS IS NOW OPEN! 🚀 Are you passionate about rare diseases? Whether you're a researcher, advocate, healthcare professional, or community leader, this is your chance to share your insights, experiences, and innovations at the Indo US Bridging RARE Summit 2025! 🧬✨ 📅 November 2-4, 2025 📍 Hylton Performing Arts Center, George Mason University, Manassas, VA Showcase your work, spark meaningful discussions, and contribute to advancing rare disease research, advocacy, and awareness. 🔗 Submit your poster abstract now: 👉 https://lnkd.in/gyTRu-TB Let’s bridge the gap, amplify voices, and drive change—together! 💙💡 Juhi Naithani Dr. Mathew T. Thomas Anish Bhatnagar John Newby Richard Bendis Amy Adams Ratna Dua Puri Amy Adams John Newby Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S #BridgingRare #Bridge4Rare #RAREsummit #CallForPosters #RareDiseaseAdvocacy #RareDiseaseAwareness

Are you ready to inspire, innovate, and ignite change in the rare disease community? 🎤✨ Join us at the Indo US Bridging RARE Summit 2025 📅 November 2-4, 2025 📍 Hylton Performing Arts Center, George Mason University, Manassas, VA 🚀 CALL FOR SPEAKER ABSTRACTS IS NOW OPEN! 🚀 This is your chance to share groundbreaking ideas, research, and stories that can shape the future of rare disease advocacy and innovation. 🔗 Register now! 👉https://lnkd.in/gGNbhED2 Let’s bridge the gap and build a stronger rare disease community—together! 💙💡 Juhi Naithani Dr. Mathew T. Thomas Dr. Anish Bhatnagar Mr. John Newby Mr. Richard Bendis Ms. Amy Adams Dr. Madhulika Kabra Dr. Neerja Gupta Dr. Ratna Dua Puri Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S #BridgingRare #Bridge4Rare #RAREsummit #CallForSpeakers #roar4rare #summit2025 #patientadvocacy

Mark your calendars! The Indo US Bridging RARE Summit 2025 is set to take place on November 2-4, 2025, at the Hylton Performing Arts Center, George Mason University, Manassas, VA.    IndoUS 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!  Register: https://lnkd.in/gGyGqmbA Stay tuned for more details.  https://lnkd.in/gTAZ_U5r    Visit the 2024 Summit gallery to have glimpse of the recent session here:  https://lnkd.in/gzTUWy8U Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Michelle Romero Indo US Organization for Rare Diseases (IndoUSrare) Saundarya M S #BridgingRARE #RareDiseaseSummit #IndoUSrare #bridge4rare #roar4rare #rarediseaseadvocacy #patientadvocacy #rarediseases #RareDiseaseDay #RDDC2025

Indeed a huge loss for drug development.