Scroll
To Top

July 10, 2015

TOPIC: Advocacy

NORD Issues Statement on House’s Approval of 21st Century Cures Initiative

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

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

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

May 28, 2015

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Posted at May 5, 2015 10:52 am by Jennifer Huron

rdinternational

 

 

 

 

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

NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

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