Published September 21, 2015 by NORD
As part of the American Plasma Users Coalition (A-PLUS), NORD and several of its member organizations submitted letters to Department of Health and Human Services Secretary Sylvia Mathews Burwell and …
Read morePublished September 17, 2015 by NORD
On September 10, the Food and Drug Administration (FDA) notified the National Organization for Rare Disorders (NORD) that it was rejecting NORD’s Citizen Petition submitted in 2011 to request that …
Continue reading “NORD Issues Statement on FDA Rejection of Citizen Petition”
Read morePublished September 16, 2015 by NORD
Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD …
Continue reading “Rare Disease Day 2016 Theme and Slogan Announced!”
Read morePublished September 16, 2015 by NORD
Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited …
Continue reading “Rare Disease Day 2016 Theme and Slogan Announced”
Read morePublished September 15, 2015 by NORD
Today, the Senate introduced the Advancing Targeted Drugs for Rare Diseases Act of 2015 (see press release below). According to NORD President and CEO Peter L. Saltonstall, “NORD supports legislation that …
Read morePublished September 15, 2015 by NORD
Today, the FDA released a blog post about a new tool for drug developers. The FDA writes, “With the vast majority of rare diseases still without FDA-approved treatments, we have …
Read morePublished September 14, 2015 by NORD
Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell Building, …
Read morePublished September 2, 2015 by NORD
A few months ago, NORD and our members hosted a “Meet the Patients” event at the annual conference of the American Medical Student Association (AMSA). We were thrilled with the …
Continue reading “NORD’S Free Student Membership: Sign up Today!”
Read morePublished August 14, 2015 by NORD
NORD was glad to have the opportunity to submit comments to the National Institutes of Health (NIH) for its Strategic Plan, where we talked about the importance of programs for rare …
Continue reading “Advocating for Rare Disease Patients at the NIH”
Read morePublished August 7, 2015 by NORD
Greetings from Salt Lake City (Day 2), As promised, I’m happy to introduce you to NORD’s State Ambassador for Utah, Gina Szajnuk. Say hello, Gina: “I am the mother of three children …
Continue reading “Rare Action™ Road Tour, Salt Lake City, UT”
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