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March 18, 2019

TOPIC: Advocacy, Featured News, Get Involved

Orphan Drug Act Resolution Introduced in the House of Representatives

Posted at March 3, 2019 04:05 pm by Christina Jensen

Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to the ODA’s enactment in 1983, only 34 therapies for… Read More

March 12, 2019

TOPIC: Events, Featured News, Press Releases

NORD Announces Honorees for 2019 Rare Impact Awards

Posted at March 3, 2019 09:35 am by Christina Jensen

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 the rare disease community at this year’s Rare Impact Awards on June 22.

The Rare Impact Awards is an event hosted… Read More

March 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE GBS|CIDP Patient Registry Launched

Posted at March 3, 2019 09:14 am by Christina Jensen

Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBS\CIDP Foundation, officially launched their patient registry, GBS|CIDP Patient RegistryNORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased… Read More

March 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE APS Type 1 Patient Registry Launched

Posted at March 3, 2019 09:09 am by Christina Jensen

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) RegistryNORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations… Read More

March 6, 2019

TOPIC: Events, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day, Sticky Posts for Homepage

Rare Disease Day 2019 Notes and Successes

Posted at March 3, 2019 04:38 pm by Christina Jensen

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud to say that Rare Disease Day 2019 was a… Read More