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June 19, 2019

TOPIC: Featured News, Medical, Patient Stories, Patients & Members, Research

The NORD Rare Disease Video Library Offers New Educational Resources

Posted by Christina Jensen

New video library launched with funding from Incyte

Washington, DC, June 19, 2019–The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and related topics for patients, caregivers, students, professionals and the… Read More

June 18, 2019

TOPIC: Featured News, Medical, Press Releases

NORD Launches Digital Education Initiative with PlatformQ Health

Posted by Christina Jensen

New program by the trusted voice and leader in the rare disease community aims to increase clinician preparedness and improve the care of patients living with rare diseases

 

BOSTON, MA and WASHINGTON, DC, June 18, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25 to 30 million Americans living with… Read More

June 17, 2019

TOPIC: Events, Featured News, Get Involved, Patients & Members

Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!

Posted by Christina Jensen

NORD’s Living Rare, Living Stronger Patient & Family Forum is coming us this weekend on June 21-23 in Houston, TX. For those not joining us in-person, please join us online! You can catch select content on Facebook Live – including the Rare Impact Awards, Saturday, June 22, 7:30p.m. CST!

Tune in for… Read More

June 13, 2019

TOPIC: Patient Stories

Jenny’s ACPMP Story

Posted by Christina Jensen

The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for ACPMP. A special thanks to NORD’s Member Organization, the ACPMP Foundation for sharing this story!

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June 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members, Press Releases, Research

NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES

Posted by Christina Jensen

Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders

Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the estimated 30 million Americans living with… Read More