Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…
Come one, come all! Well, mainly those who you live with narcolepsy... The annual Narcolepsy Network (NN) Conference is in the works, and this year, Judith Owens, MD, MPH, Associate in Neurology (and…
So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…
According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
"His health may challenge him, but his mind and determination are as sharp as ever." For decades now, Doug Burr has been actively involved in healthcare policy, with a focus…
Today's special #MotivationMonday memes are dedicated to raising awareness about Narcolepsy through our awesome Patient Worthian Kristina. Kristina has had narcolepsy symptoms since she was 12 years old and it…
Hola Pittsburgh! La Fundación de Fibrosis Quística se une al equipo de New Balance Maratón de Formación en tres días separados mientras se entrenan para el maratón de Pittsburgh. Por…
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