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Archives for: July 16th, 2014

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

The Power of Words

Written by on August 19, 2013

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

What are Your Favorite Rare Disease Movies?

Written by admin on June 7, 2013

Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.” Read More

High-School Students Raise Awareness

Written by admin on May 29, 2013

Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases. (more…)