Published January 18, 2018 by NORD
During the 2017 Rare Diseases & Orphan Products Breakthrough Summit over 700 individuals from the rare disease community gathered to advance the dialogue in rare diseases. NORD was pleased to …
Continue reading “Early Diagnosis: Perspectives from NORD Student Chapter Leader, Harjot Randhawa”
Read morePublished December 20, 2017 by NORD
Washington, D.C., December 20, 2017 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced …
Continue reading “NORD Awards Five New Grants for Rare Disease Research”
Read morePublished November 30, 2017 by NORD
Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular …
Continue reading “NORD Publishes Information for Physicians and Patients on Three Rare Diseases”
Read morePublished November 13, 2017 by NORD
Washington, D.C., November 13, 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 Li-Fraumeni …
Continue reading “NORD Publishes New Educational Resource on Li-Fraumeni Syndrome”
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 October 5, 2017 by NORD
Washington, D.C., October 5, 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 RYR-1-Related …
Continue reading “NORD Publishes New Report on RYR-1 Related Diseases”
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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