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Archives for: May 1st, 2018

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

NORD Establishes Rare Disease Patient/Caregiver Speakers Bureau

Written by Mary Dunkle on January 18, 2016

speakers-bureau-quoteThe 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