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 >
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 Ways and Means and Senate Finance committees. read more >
Posted at January 30, 2014 6:54 pm by Peter L Saltonstall
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 his 40 years in office. read more >
One of my favorite moments at NORD’s recent 30th Anniversary celebration was seeing Abbey Meyers and Congressman Henry Waxman reconnect. The two played leading roles in the drama that resulted in the Orphan Drug Act of 1983. Both went on to provide key leadership on related issues — Abbey as the president of NORD for its first 25 years and Rep. Waxman in Congress.