Published September 16, 2014 by NORD
Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day. I was diagnosed with essential thrombocythemia (ET) at age 16 after …
Continue reading “Living with Blood Cancer”
Read morePublished September 2, 2014 by NORD
Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17
Read morePublished July 11, 2014 by NORD
NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing …
Read morePublished July 9, 2014 by NORD
Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When …
Continue reading “Knowing More About Noonan”
Read morePublished June 17, 2014 by NORD
On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st …
Continue reading “NORD Recommendations for Advancing Drug Discovery, Development, and Delivery”
Read morePublished June 2, 2014 by NORD
National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action” The National Organization for Rare Disorders (NORD) has submitted comments to the …
Read morePublished May 22, 2014 by NORD
Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on …
Continue reading “NORD Board Member Testifies Before Energy & Commerce Health Subcommittee”
Read morePublished March 24, 2014 by NORD
NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this …
Continue reading “Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill”
Read morePublished March 6, 2014 by NORD
More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax …
Read morePublished February 21, 2014 by NORD
As Rare Disease Day arrives in time zones around the world, you’ll be able to track its progress on a map on RareDiseaseDay.org hosted by EURORDIS and RareDiseaseDay.US hosted by …
Continue reading “Our Shared Vision for Rare Disease Day”
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