Published November 13, 2017 by NORD
Washington, D.C., November 8, 2017 — Peter Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare …
Read morePublished November 10, 2017 by NORD
Washington, D.C., November 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …
Read morePublished November 2, 2017 by NORD
Washington, D.C., November 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …
Read morePublished October 26, 2017 by NORD
View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is …
Continue reading “NORD Releases New Documentary called “Good Morning Peyton””
Read morePublished September 26, 2017 by NORD
Washington, D.C., September 26, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the …
Read morePublished September 19, 2017 by NORD
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal …
Continue reading “NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan”
Read morePublished September 12, 2017 by NORD
Washington, D.C., September 15, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Shprintzen …
Continue reading “NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)”
Read morePublished August 31, 2017 by NORD
In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The …
Continue reading “FDA Announces First Gene Therapy in U.S.”
Read morePublished August 31, 2017 by NORD
Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be …
Continue reading “Downloadable Hurricane Harvey Emergency Relief Resources”
Read morePublished August 28, 2017 by NORD
Washington, D.C., August 28, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Sitosterolemia. …
Continue reading “NORD Publishes New Report on Sitosterolemia”
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