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August 18, 2014

TOPIC: Featured News, Medical, Patients & Members, Research

The Will to Live and the Strength for a Cure

Posted by Lisa Sencen

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived,… Read More

July 16, 2014

TOPIC: Patients & Members

Illinois Man Uses His Myelofibrosis Story to Help Others

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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 production is so poor in the bone marrow, the… Read More

July 11, 2014

TOPIC: Featured News, Advocacy

NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard

Posted by Mary Dunkle


NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing hosted by the House Energy & Commerce Committee Subcommittee on Health as part of the 21st Century Cures initiative. Read More

July 9, 2014

TOPIC: Patients & Members, Advocacy

Knowing More About Noonan

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Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When people ask why he’s so small, Katie explains… Read More

June 23, 2014

TOPIC: Patients & Members

Living With Essential Thrombocythemia (ET)

Posted by Mary Dunkle

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. (more…)