Rare Disease News

Featured Student: Scarlett Eagle

Published January 18, 2019 by NORD

Categorized in -

NORD’s Educational Initiatives team spoke with Scarlett Eagle, an undergraduate student at Iowa State University and NORD Students for Rare Club Leader. In this interview, Scarlett talks about her inspiration …

Continue reading “Featured Student: Scarlett Eagle”

NORD IAMRARE KAT6A Patient Registry Launched

Published January 9, 2019 by NORD

Categorized in -

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, KAT6A, officially launched their patient registry, KAT6A Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing …

Continue reading “NORD IAMRARE KAT6A Patient Registry Launched”

Rare Disease Day 2019 is Only 10 Weeks Away!

Published December 20, 2018 by NORD

Categorized in -

Let’s get started! 10 weeks to go until Rare Disease Day! Share your plans!

Year-End Message from NORD’s President and CEO

Published December 13, 2018 by NORD

Categorized in -

For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to …

Continue reading “Year-End Message from NORD’s President and CEO”

Orphan Drug Act Resolution Introduced in Congress

Published November 19, 2018 by NORD

Categorized in -

Download NORD’s new fact sheet on the Orphan Drug Act.

Featured Student: Jennifer Shoskes

Published November 9, 2018 by NORD

Categorized in -

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD …

Continue reading “Featured Student: Jennifer Shoskes”

Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit

Published September 20, 2018 by NORD

Categorized in -

Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure …

Continue reading “Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit”

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Published September 12, 2018 by NORD

Categorized in -

1. Raves About the Rare Summit “Inspiring and Informative. Brought me to the realization that though I may feel my ‘disease’ is the only one – there are many who …

Continue reading “Three Big Reasons Not to Miss the 2018 NORD Rare Summit”

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Published August 29, 2018 by NORD

Categorized in -

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of …

Continue reading “2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation”

Join us at the 2018 NORD Rare Summit

Published August 9, 2018 by NORD

Categorized in -

Dear Reader, I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan …

Continue reading “Join us at the 2018 NORD Rare Summit”