Global Genes | RARE Project and a host of partners are proud to continue its RARE Webinar Series, a series of educational webcasts this year on relevant and timely topics that are of interest to the RARE community. Our upcoming webinar will focus on Understanding Rare Disease Registries and will feature panelists coming at this topic from a different angle.
Understanding Rare Disease Registries, part 2
Gain a clear understanding of design, implementation, and resource considerations that are the foundations of a successful registry in this two-part webinar series.
Part 2, October 23, 2013
11:00 am Pacific Time

Register today – space is limited!
Part Two will include a demonstration of available registry platforms and will explore selected topics in greater depth, including questions or issues submitted by participants during Part One of the webinar series.
Panelists include:
  • Dr. Felix Gyi and Lauri Carlile, Chesapeake IRB
  • Liz Donohue, Coordination of Rare Diseases at Sanford (CoRDS)
  • Vanessa Rangel Miller, Patient Crossroads
  • Dr. Abbie Moore, Genetic Alliance
  • Sally Okun, PatientsLikeMe
Part one of this popular webinar series is available for viewing by clicking here. We encourage interested viewers to register and join the discussion.
A special thank you to our content partner, GlobalEpi Research, for their help in coordinating this important discussion.

1 thought on “RARE Webinar: Understanding Registries, Part 2”

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