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Archives for: August 22nd, 2018

NORD Webinar: Genetic Testing 101 for People with Rare Diseases

Written by Christina Jensen on August 22, 2018
Do you want to learn more about how genetic testing can be helpful in the diagnosis and management of rare diseases?
We will cover these topics and more in a free webinar on August 22 at 3:00 p.m. EDT. Join us as Debra Regier, MD, Director of Genetic and Genomic Education at… 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

Free Educational Webinar Policy 101: Role of Government in Rare Disease Policy and Tips to Advocate for You and Your Loved One

Written by Christina Jensen on February 20, 2018
Your local and state governments, as well as the Federal government, each play an integral role in enacting and implementing policy that affects the health and well-being… Read More

WEBINAR: In-Depth look at the 2016 NORD State Policy Report Card

Written by Christina Jensen on January 24, 2017

Please join NORD Rare Action Network team Tuesday, January 24, 2017 at 3:00pm EST for a webinar to take an in-depth look into the recently published 2016 state policy report card.

Tim Boyd, Associate Director of State Policy will present on the findings in the report card… Read More

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Written by Christina Jensen on May 23, 2016
udn-webinar
The Undiagnosed Diseases Network (UDN) brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this… Read More