RARE GENOMICS INSTITUTE INC
RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases. Rare Genomics Institute Our mission is to help undiagnosed rare disease patients access needed genetic sequencing and research for a diagnosis and a path to a cure.
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Address
Los Angeles
Rare Genomics Institute DONATE NOW Empowering Patients Today Accelerating Cures Tomorrow RG Home Rare Genomics Institute connects patients to research institutions and assists with logistics and fundraising Empowering Patients TodayAccelerating The Cures of Tomorrow At Rare Genomics we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families providing them with the necessary tools knowledge and connections so that they can better understand the cause of their disease. We bring together scientists entrepreneurs innovators and professionalswho share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.
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RARE GENOMICS INSTITUTE INC
๐ก Looking for a hands-on volunteering role at the crossroads of biomedical research and patient advocacy. Rare Genomics has options. โช๏ธ IT Lead (Remote, 5-10 hours weekly) โช๏ธ Patient Advocate Associate (Remote, 5-10 hours weekly) ๐ To learn more about, or apply to, these volunteer opportunities, visit https://www.
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RARE GENOMICS INSTITUTE INC
๐ ๐๐ข๐ฌ๐ญ๐จ๐ซ๐ฒ-๐ฆ๐๐ค๐ข๐ง๐ ๐ง๐๐ฐ๐ฌ ๐๐ซ๐จ๐ฆ ๐ญ๐ก๐ ๐ซ๐๐ซ๐ ๐๐ข๐ฌ๐๐๐ฌ๐ ๐๐จ๐ฆ๐ฆ๐ฎ๐ง๐ข๐ญ๐ฒ. KJ, an infant born with a rare metabolic disease known as severe carbamoyl phosphate synthetase 1 (CPS1) deficiency, is now the world's ๐ ๐๐๐๐ patient to be treated with personalized CRISPR gene editing therapy. After spending the first several months of his life in the hospital, on a very restrictive diet, KJ received the first dose of his bespoke therapy in February 2025 between six and seven months of age.
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