In 2008, Sandra Bedrosian Sermone gave birth to twin boys, Tony and Rocco. Early on, Tony was in and out of the hospital for four years with no diagnosis as he lost the ability to swallow, walk and talk. At 4, he was diagnosed with a number of conditions including...
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Digital communities have become support networks for patients of rare diseases, as well as professionals. They boost access to research, encourage advocacy, and aid evidence-gathering When Lucinda Andrews learned that her newborn son was only the 16th person in the world known to be diagnosed with an ultra-rare genetic disorder, she...
Tucson, Arizona — Critical Path Institute (C-Path) today announced the formation of a new task force under its Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), dedicated to advancing therapeutic development for Progressive Supranuclear Palsy (PSP). This initiative brings together leading organizations and experts in a concerted effort to tackle...
Boston, Mass. – About three years before he retired, David Campbell noticed something weird happening as he typed. Whenever he tried to hit a letter, say “a,” he’d get “aaa,” like the keyboard was jamming or his finger was triple-tapping the key. That wasn’t the only thing that seemed off—his...
Standing up sends pain through Trevor Wiberg’s back, and lifting a box is enough to throw his arm out of joint. Yet, many who meet him, including medical professionals, take one look at him and assume he’s a drug addict. His medical condition is so painful he relies on narcotics...
CALGARY — Illisha and Ian Patterson can barely recall parts of the painful and exhausting fog they moved through two years ago, when they first tried caring for their terminally ill daughter Cassandra from home. Gripped with grief and fear over her rare genetic disorder, they would face up to...
CORAL GABLES, Fla. – Catalyst Pharmaceuticals, Inc. (“Catalyst”) (Nasdaq: CPRX), a commercial-stage, patient-centric biopharmaceutical company focused on in-licensing, developing and commercializing novel high-quality medicines for patients living with rare diseases, today announced the appointment of Molly Harper to the Company’s Board of Directors. “On behalf of the Board of Directors,...
CORAL GABLES, Fla. – Catalyst Pharmaceuticals, Inc. (“Catalyst”) (Nasdaq: CPRX), a commercial-stage, patient-centric biopharmaceutical company focused on in-licensing, developing and commercializing novel high-quality medicines for patients living with rare diseases, today announced the appointment of Dr. Preethi Sundaram as Chief Product Development Officer. This position will report to the Chief...
TAYLOR — Seeking a larger house to accommodate a growing family, nine years ago Chris and Barb Savoie moved from Southgate to Taylor a month after their youngest daughter, Nikki, was born. The house is about 1 1/2 miles from Penrickton Center for Blind Children. At the time, the couple...
DUBLIN, Ireland— The “Cervical Intraepithelial Neoplasia – Pipeline Insight, 2023” clinical trials has been added to ResearchAndMarkets.com’s offering. The “Cervical Intraepithelial Neoplasia – Pipeline Insight, 2023” report offers a comprehensive overview of the Cervical Intraepithelial Neoplasia (CIN) pipeline landscape, featuring insights into more than 8 companies and over 10 pipeline drugs....