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Archives for: December 12th, 2019

Webinar: Understanding Cell & Gene Therapy Clinical Trials

Written by Valaree DonFrancesco on December 12, 2019


  • 5 main things everyone should know
  • 20 questions everyone should ask

What is a cell and gene therapy clinical trial and why should I – or anyone for that matter – consider participating in one? How do I get preliminary information on a specific clinical trial?

If you are considering a… Read More

Free Webinar: How to Make Your Insurance Work for You

Written by Lisa Sencen on December 20, 2018

Now that you are all signed up for your 2019 insurance plan, learn how to navigate it! Join us for a webinar on how to make your insurance work for you. It will cover how insurance works, information on understanding the approval process, and tips on how to successfully reverse… Read More

NORD Webinar: Genetic Testing 101 for People with Rare Diseases

Written by Lisa Sencen 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 Lisa Sencen 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 Lisa Sencen 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