Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions… Read More
This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry, “Show Your Stripes!”
Show Your Stripes takes its cue from the zebra, mascot of the… Read More
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More
In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had been living with this disease for at least six years prior to diagnosis. Read More
Quotes, mottos, and poems can be a source of motivation for many people. Speeches are often capped off with a quote from a retired world leader, actress, writer, or extraordinary mind. Usually we don’t know the context in which these words were spoken, but being removed from the quotes gives… Read More
