Indo US Organization for Rare Diseases (IndoUSrare)

?? Exciting news! I’m honored to be a finalist for the 2024 RareVoice Awards, celebrating the voices that amplify rare disease advocacy. Join me on December 11 at the Ronald Reagan Building and International Trade Center in Washington, DC, for an unforgettable evening of inspiration and celebration. Let’s come together to honor all the finalists and awardees who are making a difference in the rare disease community. ??? Reserve your spot today: https://hubs.li/Q02ZbJn50 EveryLife Foundation for Rare Diseases Jeeva Clinical Trials Inc. Indo US Organization for Rare Diseases (IndoUSrare) I can’t wait to celebrate with you! #RareVoice2024

Dr. Harsha Rajasimha, PhD, our founder & executive chairman will attend the FDA CBER Public Patient Listening Meeting on December 4, 2024, focusing on patient and caregiver perspectives on enrolling rare disease patients in gene therapy clinical trials at pre-symptomatic or early symptomatic stages. This virtual meeting, free and open to the public, offers a platform to shape the future of gene therapy. For more, visit: https://buff.ly/3AYoCVu #GeneTherapy #RareDiseases #PatientAdvocacy #FDA #ClinicalTrials

Watch Bijaya Mishra, MD, Board Director, Rare Disease Society Nepal (RDSN) highlighting the rare disease landscape in Nepal. This insightful discussion explores the incredible work of the Rare Disease Society Nepal and its collaboration with IndoUSrare, highlighting key moments and impact from the Indo US #BridgingRARE Summit 2023. Learn how partnerships are making strides in rare disease awareness, research, and advocacy, bringing hope and solutions to communities in need. Watch what other speakers from 2023 session are talking about from here: https://lnkd.in/gF2mqmJZ 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) #rarediseaseawareness #Nepal #IndoUSrare #bridge4rare #PatientAdvocacy

Summary of the 3-day conference: Day 1: The conference commenced with pre-conference workshops on clinical trial readiness, patient advocacy, emotional wellbeing, and clinical genomics. The gala event featured parent advocacy presentations, showcasing their vision and mission. Key takeaways: included enhanced clinical trial knowledge, empowered patient advocacy, and emotional wellbeing strategies. Methodology of data Collections, Consent and Data Privacy, Inclusion of Stakeholders at all levels of the structure , Techniques followed in US were discussed , Importance of Technology usage like Apps and mobile , current situations Prevalent In India and success stories of few PAG’s, SME role in PAG. Day 2: focused on epidemiology and digitization, screening and diagnosis, care pathways and novel therapies, and industry priorities for US-India partnerships. Patient voices shared personal stories and advocacy efforts. Key takeaways included knowing advances in rare disease research, innovative therapies across the Globe, and strengthens collaborating and networking US-India partnerships. CRISPR Based Diagnostics for Sickle Cell Anemia, Carrier Screening, ICMR Rare Disease Portal etc. Day 3: The final day explored industry priorities for US-India partnerships, global inclusion and access to orphan drugs and lessons from neuromuscular disorders. Discussions centered on cross-border collaborations, pricing models, and translating research into clinical practice. Key takeaways included strategies for global inclusion, access to orphan drugs, and insights from neuromuscular disorder research. The panel discussions included a diverse range of stakeholders, from the Ministry of Health, ICMR, AIIMS, DCGI, CDSCO, FDA Officials, Pharma companies, therapeutics, premier diagnostics agencies, COE Heads, parent advocacy groups, and rare parents. Indo US Organization for Rare Diseases (IndoUSrare) AIIMS (All India Institute of Medical Sciences, New Delhi) Amrit Ray, M.D. Aarogya Seva: Global Health Volunteer Alliance BridgeBio Christina Raj CureSMA Foundation of India Nadir Aman Navin Tara Kamath PMP? Dr. Ratna Devi Raregivers Indian Council of Medical Research (ICMR) Amrit Ray, M.D. Krishna S. Michelle Romero Mohua Chakraborty Choudhury Tamahar Trust LifeArc Dr.bangarurajanJDCI Cdsco

Let's create a world in which people living with all types of skin diseases are healthy and fulfilled! Register today for the crucial webinar on achieving Universal Health Coverage, as we urge Member States to adopt a resolution calling on the WHO to develop a Global Action Plan for All Skin Diseases. #WHO #ResolutionForAllSkin??

Today, IndoUSrare marks 5 incredible years of commitment to rare diseases. This milestone wouldn't have been possible without your unwavering support and the tireless efforts of our amazing team and partners. Let’s continue to Bridge RARE and bring hope to those who need it most. Join us in commemorating this special occasion today! ?? Thank you for being part of this journey. Together, we are stronger! Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #November25th #IndoUSrare #RareDiseases #BridgingRare #Bridge4Rare #foundingday

Had an awesome time as a speaker at the Indo US Organization for Rare Diseases (IndoUSrare) summit where I elaborated on the story of Myositis India. My time at Myositis India has been incredibly meaningful, and an opportunity to represent our team was a privilege. Got to connect with awesome people from India and the US, learnt a lot about patient advocacy and challenges unique to rare diseases.

Dr. Abbey Meyers, Founder of National Organization for Rare Disorders, shared a heartfelt message honoring the Abbey Meyers Khushi Award recipients: Dr. Rahul Purwar (ImmunoACT), Dr. Hasmukh Jain (Tata Memorial Centre), and Frank Sasinowski (Hyman, Phelps & McNamara, P.C.) at the Indo US Bridging Rare Summit 2024. Relive this special moment through this video as we celebrate their exceptional contributions to rare diseases. ?? 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) #RareDiseases #AbbeyMeyersKhushiAward #PatientAdvocacy #bridgingrare #bridge4rare #roar4rare

Listen to Geetika Srivastava, Lead-Team Asha, Hematologist - Medical Oncologist, Medical Officer, Division of Oncology 3, CBER, FDA talking about U.S.-India Cancer Dialogue, role of Team Asha, & other aspects like launch of cancer moonshot initiative by Quad Countries to reduce the burden of cancer in the Indo-Pacific region. Check out our conversation with other speakers of 2023: https://lnkd.in/guNwUAhp 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 #roar4rare #oncology #cancer #CancerMoonshot #TeamAsha

“Great things happen when people come together with a shared purpose and vision.” Being part of the Indo-US Rare Bridge Summit was an incredible and enriching experience. This platform provided a unique opportunity to delve deeper into the dynamics of rare diseases, offering insights into global advancements and the remarkable potential within India. It was inspiring to witness the commitment of diverse stakeholders—policymakers, industry leaders, Pharma, CDSCO, clinicians, ICMR, researchers, patient groups, FDA and many international stakeholders - all united in their resolve to reshape the Indian rare disease landscape. Rare diseases are a global challenge, and addressing them requires collective action across borders. The Indo-US Rare initiative, led by Harsha Rajasimha and entire team is a commendable effort to connect two worlds and drive meaningful change. It was a privilege to engage with some of the brightest minds in healthcare. Let’s hope this momentum translates into timely access to treatments and brighter futures for our loved ones.