Written by Christina Jensen on December 13, 2018
For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to integrate the patient’s voice or providing assistance to those in need, NORD is the organization the rare disease community and… Read More
Written by Christina Jensen on May 1, 2018
Have you heard of a patient or natural history registry but have no idea what it was? Interested in starting a registry for your patient population but not sure where to start?
We will cover these topics and more in an educational webinar on May 1. NORD’s Research Programs Manager, Suzanne… Read More
Written by Christina Jensen on June 22, 2016
The CdLS Scientific and Educational Symposium brings together physicians in various clinical disciplines, scientific researchers, teachers, and allied health professionals.
Through lectures, poster session and formal discussions, attendees will learn about medical and educational issues facing individuals with the syndrome, as well as… Read More
Written by Mary Dunkle on January 18, 2016
The National Organization for Rare Disorders (NORD) has established a Patient/Caregiver Speakers Bureau through which volunteers will share their stories to promote better understanding of the challenges of living with a rare disease.
Speakers will be paired with opportunities to speak in… Read More
Written by Jennifer Huron on August 24, 2015
A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.
“Living with a rare condition like nOH affects every part of… Read More