July 10, 2015
Posted at July 7, 2015 04:36 pm by Jennifer Huron
Washington, D.C. – July 10, 2015 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s approval by the House of the 21st Century Cures legislative initiative.
Today’s passage in the House of the 21st Century Cures (H.R. 6) bill is a huge win for the rare… Read More
June 17, 2015
TOPIC: Press Releases, Featured News, Research, Advocacy
Posted at June 6, 2015 12:38 pm by Jennifer Huron
Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery. Patients share their experiences in profiles that accompany this study. Read… Read More
June 3, 2015
Posted at June 6, 2015 06:50 pm by Jennifer Huron
NORD has finalized its comments on 21st Century Cures Act. Read them here: NORD Comments on the 21st Century Cures Act.
May 28, 2015
TOPIC: Press Releases, Featured News, Patients & Members, Advocacy
Posted at May 5, 2015 10:52 am by Jennifer Huron
Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public… Read More
May 21, 2015
TOPIC: Press Releases, Featured News, Advocacy
Posted at May 5, 2015 04:38 pm by Jennifer Huron
NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and the introduction of the OPEN Act in the United States Senate.
NORD congratulates the House Energy and Commerce Committee for unanimously approving the 21st Century Cures initiative. As Chairman… Read More