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 body tries to compensate by moving the process over to the spleen. For Bill, the news that his spleen had already enlarged to twice its normal size was alarming, to say the least. read more >
Posted at June 19, 2014 9:12 am by Barbara Hollister
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend every waking moment agonizing about your child’s health and quality of life; you feel helpless and alone. Nobody seems to understand, and some people even insist your child is fine and you are overreacting. Deep down, you know there is something wrong. That is what the Hoffmans experienced after the birth of their son, Ethan. read more >
NORD’s Portraits of Courage Celebration on May 8, 2014, highlighted the many ways in which patients and caregivers display great dignity and grace in living with challenging rare diseases. Patients and families featured in the Portraits of Courage gallery providing an inspiring presence at the event.
We thank our sponsors and supporters who made it all possible, and extend congratulations to our honorees for their accomplishments. NORD will be displaying the Portraits of Courage gallery at other events throughout the year. View our list of sponsors and read the press release listing our honorees.
The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.
Over the last couple of weeks, our community of cystinosis families has been enriched by an exchange of “med-art” that began with a Facebook post by Clinton Moore, a dad of a child with cystinosis. He shaped the morning dose of pills that his son, Chandler, takes into a smiley face. He then posted it to make other families smile. read more >