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
According to a story from Venture Beat, the company Healx has succesfully raised $56 million in funds that will go towards using artificial intelligence (AI)
According to a story from MedCity News, interim data from a phase 1/2 clinical trial testing Zolgensma, a gene therapy for spinal muscular atrophy, in
Gypsy Rose Blanchard spent a life suffering through neverending doctors appointments, surgeries, living in a wheelchair, and being fed through a feeding tub. As it
According to a story from the TGen Blog, a simple typing mistake lead to a diagnosis for a boy with an incredibly rare genetic disorder.
Happy Thursday! It’s cold and flu season around our parts, so we hope everyone reading this has dodged the fall viruses! This week, we’re sharing