Rare Disease News

NORD IAMRARE DHPS Patient Registry Launched

Published April 26, 2019 by NORD

Categorized in -

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of …

Continue reading “NORD IAMRARE DHPS Patient Registry Launched”

The 2019 Rare Neurological Disease Special Report Is Now Available

Published April 17, 2019 by NORD

Categorized in -

This 5th annual issue is the largest to date and focuses on the progress in medical science, genetics, and neuromuscular diseases Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) …

Continue reading “The 2019 Rare Neurological Disease Special Report Is Now Available”

NORD Announces Honorees for 2019 Rare Impact Awards

Published March 12, 2019 by NORD

Categorized in -

Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of …

Continue reading “NORD Announces Honorees for 2019 Rare Impact Awards”

NORD IAMRARE GBS|CIDP Patient Registry Launched

Published March 8, 2019 by NORD

Categorized in -

Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBSCIDP Foundation, officially launched their patient registry, GBS|CIDP Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those …

Continue reading “NORD IAMRARE GBS|CIDP Patient Registry Launched”

NORD IAMRARE APS Type 1 Patient Registry Launched

Published March 8, 2019 by NORD

Categorized in -

Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built …

Continue reading “NORD IAMRARE APS Type 1 Patient Registry Launched”

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Published January 16, 2019 by NORD

Categorized in -

Get ready to #ShowYourStripes for Rare Disease Day, the biggest day of the year for the rare disease community.

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Published January 3, 2019 by NORD

Categorized in -

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as …

Continue reading “NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases”

NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Published November 29, 2018 by NORD

Categorized in -

Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …

Continue reading “NORD Publishes Report on Post-Transplant Lymphoproliferative Disease”

Updated Study Analyzes Use and Cost of Orphan Drugs

Published October 18, 2018 by NORD

Categorized in -

Press Releases

Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the …

Continue reading “Updated Study Analyzes Use and Cost of Orphan Drugs”

Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs

Published October 11, 2018 by NORD

Categorized in -

NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links …

Continue reading “Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs”