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STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients
“Social distancing and mask-wearing are nothing new for people with rare diseases that raise their risk of deadly infections.”
NORD Students for Rare Member Provides Her Perspective on “Unlocking the Power of Health Care Data” Summit Panel
“As a pre-health student, I was fascinated to hear about the ways health care is becoming digitized and how experts predict that technology will continue to become further integrated into health care in the coming years. ”
In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP
“The RDCA-DAP initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for rare diseases.”
Patient Advocacy Group Leaders Tell How Data Sharing Can Help with Understanding Rare Diseases in New Video
“Data sharing supports patients by helping the community understand their disease better, which helps improve clinical care and can accelerate the development of new treatments. ”
