Rare Disease News

NORD Responds to AHIP Report on Orphan Drug Act

Published September 2, 2016 by NORD

Categorized in -

Advocacy

By Peter L. Saltonstall One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA). It was intended to stimulate …

Continue reading “NORD Responds to AHIP Report on Orphan Drug Act”

Key Dates Approaching for NORD Summit

Published August 18, 2016 by NORD

Categorized in -

Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit

NORD Publishes Expanded Access FAQ

Published August 15, 2016 by NORD

Categorized in -

NORD has published a new guide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines. In the guide, NORD answers frequently asked questions including …

Continue reading “NORD Publishes Expanded Access FAQ”

NORD Issues Statement in Response to PDUFA VI Commitment Letter

Published July 21, 2016 by NORD

Categorized in -

Advocacy

On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI. The PDUFA …

Continue reading “NORD Issues Statement in Response to PDUFA VI Commitment Letter”

Advocacy Alert: Illinois Rare Disease Commission Bill

Published July 15, 2016 by NORD

Categorized in -

UPDATE: July 11, 2016 Illinois HB 4576 is close to passing! This bill would establish a Rare Disease Commission that would give patients – many of whom are too young …

Continue reading “Advocacy Alert: Illinois Rare Disease Commission Bill”

NORD Issues Statement as Senate Postpones Vote on Cures Legislation

Published July 14, 2016 by NORD

Categorized in -

Advocacy

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its …

Continue reading “NORD Issues Statement as Senate Postpones Vote on Cures Legislation”

July 13 Day of Action: Last Chance for Zika Funding

Published July 13, 2016 by NORD

Categorized in -

Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week …

Continue reading “July 13 Day of Action: Last Chance for Zika Funding”

Register: Rally for Medical Research Hill Day 2016, Sept. 21-22

Published June 29, 2016 by NORD

Categorized in -

Save the date for Sept. 21-22 for a nationwide day of action! Join NORD and 300+ partner organizations as we ‘rally’ for medical research as part of the annual Rally …

Continue reading “Register: Rally for Medical Research Hill Day 2016, Sept. 21-22”

Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

Published June 22, 2016 by NORD

Categorized in -

NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature recently created a Prescription Drug …

Continue reading “Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients”

Join the Team: Running for Rare Takes on Hartford

Published June 21, 2016 by NORD

Categorized in -

Join us in Hartford, Conn. on October 8th! For the first time, NORD’s charity marathon team, Running for Rare, will participate in the Eversource Hartford Marathon. We are thrilled to have the team …

Continue reading “Join the Team: Running for Rare Takes on Hartford”

Rare Disease News

Access State Report Card Data