Written by Christina Jensen on March 16, 2015
NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC). NCC focuses on bringing quality genetic and newborn screening services to local communities, and… Read More
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
Written by Mary Dunkle on March 6, 2014
More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC). The deadline to sign on is cob Friday, March 7. NORD will send the letter to the House… Read More
Written by on January 30, 2014
The announcement by Congressman Henry A. Waxman that he will not seek re-election after this term has reminded all of us at NORD — and throughout the rare disease community — of how very much we honor and respect the numerous contributions of this brilliant and caring public official over… Read More
Written by Mary Dunkle on October 23, 2013
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis?
We were stunned at the response. Within the first few hours, we got 200 replies and 20% of those who responded had… Read More
