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Archives for: July 6th, 2020

The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

Written by Laura Mullen on July 6, 2020

During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, many patients have switched to receiving ongoing care through telehealth. Telehealth is generally described as a virtual communication used to… Read More

NORD Debuts Rare Disease Day 2020 Video

Written by Laura Mullen on February 26, 2020

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

Illinois Man Uses His Myelofibrosis Story to Help Others

Written by on July 16, 2014

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

Living With Essential Thrombocythemia (ET)

Written by Mary Dunkle on June 23, 2014

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