Published 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”
Read morePublished August 21, 2017 by NORD
Washington, D.C., August 21, 2017—Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, …
Read morePublished August 15, 2017 by NORD
Register now for the NORD Rare Summit to advance the dialogue on issues of unprecedented importance to the rare disease community.
Read morePublished July 25, 2017 by NORD
Washington, D.C., July 25, 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 Retinal …
Read morePublished July 20, 2017 by NORD
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote …
Read morePublished July 7, 2017 by NORD
Washington, D.C., July 7, 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 Bosma …
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