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Archives for: May 31st, 2018

A Celebration of NORD’s 35th Anniversary

Written by Lisa Sencen on May 31, 2018

On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD’s 35th Anniversary and to recognize the amazing accomplishments of the 2018 honorees during NORD’s 35th Anniversary Celebration presenting… Read More

Penn State Graduate Rare Disorder Survey

Written by Lisa Sencen on September 12, 2016
rare-disorder-survey

Written by: Kerri Nelson, graduate student at Penn State University and mother to a child with a rare disease.


masonAs both a mother to a child with a rare disorder and a healthcare professional, I was at loss for words when my… Read More

Key Dates Approaching for NORD Summit

Written by Lisa Sencen on August 18, 2016

Advanced Pricing Deadline is Friday, August 26

Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.

Poster Abstracts are due Friday, August 19

Calling all researchers… 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