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Archives for: June 28th, 2016

NORD Publishes Physician Guide to Mitochondrial Myopathies

Written by Jennifer Huron on June 28, 2016
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As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free online to medical professionals around the world.

The NORD Physician Guide was written by two widely acknowledged experts on… Read More

NORD Members Share Great Resources for ER Visits During #RareERChat

Written by Mary Dunkle on May 27, 2016
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Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire family.

For that reason, NORD was delighted to host a tweetchat with Texas Children’s Hospital –… Read More

Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

Written by Mary Dunkle on March 24, 2014
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NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed… Read More