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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: Advocacy, Featured News

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: Advocacy, Patients & Members

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…)

June 17, 2014

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

NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Posted by Mary Dunkle

On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. Read More