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

May 1, 2018 @ 2:00 pm - 3:00 pm

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 Rossov, will give an overview on what registries are, the various types of registries, and the benefits of participating in them. Then, Alexandra Kruse from the Platelet Disorder Support Association will talk about her organization’s experience with starting a registry as well as the challenges they faced.

This webinar will be perfect for patients, caregivers, rare disease patient organization leaders, and researchers who want to learn more about registries.

Register using the link here: