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May. 12, 2016

TOPIC: Advocacy, Events, Industry, Medical, Patients & Members, Press Releases, Research

NORD to Hold Rare Diseases Roundtable

Posted by Jennifer Huron

NORD_RareImpactAwards2016_Program_Page6The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community.

The roundtable will be held at the Warner Theatre in Washington, D.C., where NORD’s 2016 Rare Impact Awards are scheduled to take place that evening.  Participants include the 2016 Rare Impact Award honorees and represent patients, parents and advocacy leaders; researchers; doctors; legislators; a leading bioethicist; and pharmaceutical executives. NORD president and CEO, Peter L. Saltonstall, will participate and Mary Dunkle, vice president of educational initiatives at NORD, will moderate the conversation.

“We have seen many accomplishments in the past year for rare diseases, with a record number of new orphan drugs approved and several legislative advances, including cost sharing legislation in several states,” said Saltonstall.  “Our goal is to help drive further progress.”

There are 30 million Americans—1 in 10 people, most of whom are children—who are affected by approximately 7,000 rare diseases.  Ninety-five percent of rare diseases have no treatment.

NORD will live-tweet the event using the hashtag #RareImpact and plans to publish follow-up reports based on the discussion.

Media are invited to attend and must register in advance by contacting Jennifer Huron at jhuron@rarediseases.org or 203.304.7258.

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