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
Indo US Organization for Rare Diseases (IndoUSrare)
医院和医疗保健
Herndon,VA 3,229 位关注者
Accelerating therapies for rare diseases by fostering cross-border collaborations, clinical trials, & data sharing.
关于我们
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
- 网站
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www.indousrare.org
Indo US Organization for Rare Diseases (IndoUSrare)的外部链接
- 所属行业
- 医院和医疗保健
- 规模
- 11-50 人
- 总部
- Herndon,VA
- 类型
- 非营利机构
- 创立
- 2019
- 领域
- 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和cross-border
地点
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主要
US,VA,Herndon
Indo US Organization for Rare Diseases (IndoUSrare)员工
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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|…
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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
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Indo US Organization for Rare Diseases (IndoUSrare)转发了
“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.
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During his visit to the Indo US Bridging RARE Summit 2024 as a chief guest, Dr. Chandra Pemmasani, Minister of State for Rural Development and Communications, Govt. of India. explored several booths at the Indo US Bridging RARE Summit 2024! He engaged with exhibitors, explored innovative solutions, and learned about groundbreaking initiatives aimed at transforming the lives of those impacted by rare diseases. This interaction reflected the importance of collaboration and innovation in advancing rare disease research, patient care, and advocacy on a global scale. 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 Premas Life Sciences Pvt Ltd. Jeeva Clinical Trials Inc. Dr Lal PathLabs MEDGENOME āshibio, Inc Dhiti Omics Ministry of Rural Development Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #indousrare #bridge4rare #bridgingrare #roar4rare #patientadvocacy #indousrareventday3 #exhibitors
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Indo US Organization for Rare Diseases (IndoUSrare)转发了
In India there may be many children suffering from MNGIE disease they are often misdiagnosed with celiac disease, pseudo obstruction and other neurological problems. *A group of active MNGIE patients*
It is with great sadness that I have to inform you that in the last 6 months, four MNGIE children from my group have left this world, while waiting for any treatment. One's again a humble request to all COE (Center of Excellence, India) to include MNGIE in the Rare Disease Panel, so that these innocent children can get some financial help(from government Rare disease policy)for Liver Transplant as alternative treatment and at the same time try to bring the clinical trials for enzyme replacement therapy, which have being conducted in other countries to India as well, so that many children can be saved. #MNGIE #MitochondrialNeuroGastroIntestinalEncephalopathy #Neurologist #gastrointestinal #ENTR501 #Entrada #MichioHirano #COERareDiseases #AIIMS #NIMHANS #RarediseaseIndia Harsha K Rajasimha Ramya T karur NATRAJANSUNDARAM Nataraj Ratna Dua Puri Dr Ashwin Dalal KULDEEP SINGH Dr. Priyanshu Mathur Jagadeesh Menon
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A warm welcome to Cure GABA A Variants, the newest Patients Alliance member of the Indousrare Program! Let's raise awareness, enhance care, and empower patients and families affected by rare diseases. Reach out via this form: https://lnkd.in/gdHn5-6D Make a difference through your contributions. Visit https://buff.ly/3RJ5Zdm Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S Indo US Organization for Rare Diseases (IndoUSrare) #indousrare #allianceforrare #patientalliancemember #rarediseases?#patientcare
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Indo US Organization for Rare Diseases (IndoUSrare)转发了
For the last 3 days it has been an honor and privilege to lead the Indo US Bridging Rare Summit 2024 to celebrate India's progress in combating rare diseases. Not because it is perfect, but because it is making strides and progress in the right direction. US-India cross-border collaborations are going to be a key driver of progress!!! Indo US Organization for Rare Diseases (IndoUSrare) AIIMS (All India Institute of Medical Sciences, New Delhi) **Official GoI Press Alert** Indo-US Bridging RARE Summit 2024: Effort against rare diseases, celebrates India's health sector transformation #Bridgingrare #Bridgingrare2024 Read more At: https://lnkd.in/eu-Nw3aY
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@chandra pemmasani @aiims_newdelhi please help!!!
In India there may be many children suffering from MNGIE disease they are often misdiagnosed with celiac disease, pseudo obstruction and other neurological problems. *A group of active MNGIE patients*
It is with great sadness that I have to inform you that in the last 6 months, four MNGIE children from my group have left this world, while waiting for any treatment. One's again a humble request to all COE (Center of Excellence, India) to include MNGIE in the Rare Disease Panel, so that these innocent children can get some financial help(from government Rare disease policy)for Liver Transplant as alternative treatment and at the same time try to bring the clinical trials for enzyme replacement therapy, which have being conducted in other countries to India as well, so that many children can be saved. #MNGIE #MitochondrialNeuroGastroIntestinalEncephalopathy #Neurologist #gastrointestinal #ENTR501 #Entrada #MichioHirano #COERareDiseases #AIIMS #NIMHANS #RarediseaseIndia Harsha K Rajasimha Ramya T karur NATRAJANSUNDARAM Nataraj Ratna Dua Puri Dr Ashwin Dalal KULDEEP SINGH Dr. Priyanshu Mathur Jagadeesh Menon
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A warm welcome to NiemannPick India , the newest Patients Alliance member of the Indo US Organization for Rare Diseases (IndoUSrare)'s #Patientalliance Program! Let's raise awareness, enhance care, and empower patients and families affected by rare diseases. Reach out via this form: https://lnkd.in/gdHn5-6D Make a difference through your contributions. Visit https://buff.ly/3RJ5Zdm Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S #indousrare #allianceforrare #patientalliancemember #rarediseases?#patientcare
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The Indo-US Bridging RARE Summit 2024 has been featured on ANI News! It was an honoring moment to witness Harsha K Rajasimha, PhD, Indo US Organization for Rare Diseases (IndoUSrare) and Madhulika Kabra, MD, AIIMS (All India Institute of Medical Sciences, New Delhi), welcoming the chief guest of the event, Dr. Chandra Pemmasani, Minister of State for Rural Development and Communications, Govt. of India. This transformative event brought together key speakers from India and the US to address rare diseases, cross-border collaborations, and diversity in orphan drug development. Dive into the highlights and see how we're making strides toward turning rare diseases into rarely seen ones. https://lnkd.in/gGMyER5E 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 Ministry of Rural Development Harsha K Rajasimha Narayanan Govindarajan Reena Kartha Nisha Venugopal Ramya T karur Saundarya M S #rarediseases #indousrare #indousbridgingraresummit2024 #bridgingrare #bridge4rare #roar4rare