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Archives for: September 12th, 2017

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Written by Christina Jensen on September 12, 2017
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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 Goldberg Syndrome (SGS). This new resource is available free online to individuals around the world.

As the primary advocacy organization… Read More

NORD Publishes New Report on Sitosterolemia

Written by Christina Jensen on August 28, 2017
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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. This new resource is… Read More

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Written by Christina Jensen on July 25, 2017
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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 Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.

As the primary… Read More

Tweetchat on Genetic Testing, #genetest101

Written by Christina Jensen on July 13, 2017
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NRD-1082 ChildNatl_Tweetchat_v6

Tweetchat Coordinates
When: Thursday, July 13, 2:00 p.m. – 3:00 p.m. ET
Tweetchat Hashtag:… Read More

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Written by Christina Jensen on June 13, 2017
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Washington, D.C., June 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 CARD9 Deficiency. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the… Read More