{"id":470672,"date":"2021-04-05T08:03:31","date_gmt":"2021-04-05T12:03:31","guid":{"rendered":"http:\/\/www.marketnewsdesk.com\/?p=470672"},"modified":"2021-04-05T08:03:31","modified_gmt":"2021-04-05T12:03:31","slug":"n-lorem-foundation-partners-with-ultragenyx-to-bolster-development-of-personalized-medicines-for-patients-with-ultra-rare-diseases","status":"publish","type":"post","link":"https:\/\/www.marketnewsdesk.com\/index.php\/n-lorem-foundation-partners-with-ultragenyx-to-bolster-development-of-personalized-medicines-for-patients-with-ultra-rare-diseases\/","title":{"rendered":"n-Lorem Foundation Partners with Ultragenyx to Bolster Development of Personalized Medicines for Patients with Ultra-Rare Diseases"},"content":{"rendered":"

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n-Lorem Foundation Partners with Ultragenyx to Bolster Development of Personalized Medicines for Patients with Ultra-Rare Diseases<\/b><\/p>\n

Foundation\u2019s collaboration with premier rare disease company strengthens efforts to reach more patients in need<\/i><\/p>\n

SAN DIEGO–(BUSINESS WIRE<\/a>)–n-Lorem Foundation<\/a>, a nonprofit organization that provides free, lifetime supplies of individualized RNA-targeted medicines to patients living with ultra-rare diseases, today announced a new partnership with Ultragenyx Pharmaceutical<\/a> (NASDAQ:RARE), a biopharmaceutical company focused on the development and commercialization of novel products for serious rare and ultra-rare genetic diseases.\n<\/p>\n

\nn-Lorem Foundation is the first and only foundation with a mission to provide potentially life-saving treatments to patients who have diseases caused by extremely rare mutations (1 to 30 patients worldwide) for free, for life, by coupling advanced genomic diagnostics with antisense oligonucleotides (ASOs) medicines. The new collaboration with Ultragenyx, one of the leading rare disease companies in the world, and its CEO and founder, Dr. Emil Kakkis, bolsters n-Lorem\u2019s mission to bring immediate hope and rapid treatment to ultra-rare disease patients in need.\n<\/p>\n

\n\u201cOn behalf of the patients we serve, I thank Dr. Emil Kakkis and Ultragenyx for their generous support, and I look forward to working with Emil and his team at Ultragenyx to bring therapies to patients with ultra-rare diseases for free, for life,\u201d said Dr. Stanley T. Crooke, Founder, CEO and Chairman of n-Lorem Foundation. \u201cUltragenyx joins Ionis Pharmaceuticals, Biogen, Charles River Labs, Covance by Labcorp, and Korea Institute of Toxicology (KIT) as industry partners supporting our efforts at n-Lorem. We look forward to working with other health care companies in the future.\u201d\n<\/p>\n

\nUltragenyx focuses on developing products for serious rare and ultra-rare genetic diseases, and Dr. Kakkis brings a wealth of valuable expertise through his work on policy and industry issues affecting rare disease treatment development. The additional resources, financial contribution and experience from both the company and Dr. Kakkis will be critical as n-Lorem continues to scale-up its unique charitable treatment model to help patients with ultra-rare mutations.\n<\/p>\n

\n\u201cToday, we have the science to treat some of the rarest diseases in the world, and these patients deserve treatments,\u201d said Emil D. Kakkis, M.D., Ph.D., CEO and President of Ultragenyx Pharmaceutical. \u201cWe are proud to partner with n-Lorem, a first-of-its-kind organization that is using a proven technology to develop treatments for patients with these ultra-rare diseases for the first time.\u201d\n<\/p>\n

\nTo learn how your organization can partner with n-Lorem and help answer the challenge of treating patients with ultra-rare diseases, contact Tracy Johnson, Executive Director (Tracy.Johnson@nlorem.org<\/a>). Learn more about n-Lorem\u2019s mission at www.nlorem.org<\/a>, and please consider giving<\/a> to n-Lorem to bring hope, possibility and treatment options to these desperate patients and families.\n<\/p>\n