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Archives for: December 13th, 2018

Year-End Message from NORD’s President and CEO

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

Patient Registries Webinar: What They Are and How to Start One

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

Seventh National CdLS Scientific & Educational Symposium

Written by Christina Jensen on June 22, 2016

cdls-logoThe 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