The National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is a nonprofit organization dedicated to serving the rare disease community through education, research, and patient advocacy. Through targeting patient organizations, medical personnel, and researchers trying to develop new diagnostics and treatments, NORD supports all parts of this community to ultimately improve the lives of patients and families affected by rare diseases. After all, alone we are rare, but together we are strong®. *Patient Worthy served as a 2016 Rare Disease Day Partner with NORD.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Rare Disease
Philippe Pakter’s daughter Lysiane was born on March 29th 2017 in Lyon, France. However, soon after her birth, Philippe and his partner Delphine were hit
Happy Thursday, Patient Worthy Friends! This week we’re highlighting two stories on families who went on a diagnostic odyssey to understand their children’s rare diseases.
According to a story from The People’s Pharmacy, the US Food and Drug Administration (FDA) has given the green light for the use of generic
According to a story from ucb.com, the biopharmaceutical company UCB has recently released the final results from its phase 2 clinical trial which tested the
By Jack Gerard from In The Cloud Copy Travis Allen, of Lisbon, Iowa, was a painter who specialized in photorealistic works. Unfortunately, a rare
According to a story from the Washington Post, rare diseases are a much more widely spread problem than you might think. There are at least