Written by Jennifer Ryan on December 16, 2020
As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical professionals and research experts. Specifically, I was very drawn to the “Unlocking the Power of Health Care Data” panel,… Read More
Written by Jennifer Huron on June 28, 2016
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… Read More
Written by Jennifer Huron on August 26, 2015
“I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann
Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial Disease, a rare disease that can be present at birth or come on later in life…. Read More