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Archives for: November 13th, 2017

NORD Publishes New Educational Resource on Li-Fraumeni Syndrome

Written by Christina Jensen on November 13, 2017

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 Syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the… Read More

Musical Act Announced for Rare Impact Awards on May 18th

Written by Jennifer Huron on March 2, 2017

Washington, D.C., March 2, 2017—On Thursday, May 18, nationally touring musical artist Gaelynn Lea will perform at the Rare Impact Awards ceremony in Washington, D.C.  In 2016, Gaelynn Lea was named the winner of NPR Music’s second-ever Tiny Desk Contest. Her music video entry rose to the top of over… Read More