World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

Writing Your Own Respiratory Protocol

Life with a fatal lung disease like idiopathic pulmonary fibrosis (IPF) is very unpredictable. I thrive in routine, familiarity, and structure, so I have difficulty accepting that this disease can force instant changes. I’m still working on learning to let go of what I cannot control, like an…

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…