Published January 24, 2020 by NORD
NORD is pleased to launch an addition to our robust rare disease programs providing financial support to the rare disease community. NORD’s new Neuromyelitis Optica Spectrum Disorder (NMOSD) Program provides …
Read morePublished January 23, 2020 by NORD
Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, …
Read morePublished January 20, 2020 by NORD
At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and …
Continue reading “NORD Reaches 300 Members!”
Read morePublished January 17, 2020 by NORD
At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …
Continue reading “Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation”
Read morePublished January 16, 2020 by NORD
Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease …
Continue reading “NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!”
Read morePublished January 7, 2020 by NORD
At NORD, we know that patient-powered initiatives change the world.
Read morePublished December 20, 2019 by NORD
Washington, DC, December 20, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new …
Continue reading “NORD Welcomes Two New Members to Board of Directors”
Read morePublished December 9, 2019 by NORD
On Saturday, December 7, the Washington Post‘s Erin Blakemore profiled NORD’s Rare Disease Database and website, rarediseases.org, in the paper’s Health column. The following is an excerpt from the article: …
Read morePublished December 3, 2019 by NORD
By Debbie Drell, Director of Membership My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she …
Continue reading “NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development”
Read morePublished December 2, 2019 by NORD
Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and …
Continue reading “What Questions Would You Ask About Gene Editing?”
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