RARE Webinar: World RARE Disease Day 2017 Planning



(Watch Recorded Webinar / Download PDF)


Are you ready to raise awareness for your rare disease?  With World RARE Disease Day is right around the corner (February 28, 2017), join Global Genes for this popular and fun webinar intended energize, inspire, and educate those within the community to prepare them for one of the biggest events of the year!

This session will explore event ideas to create awareness for your specific rare disease, as well as the rare disease community as a whole.

Topics include:

  • Hosting your own World RARE Disease Day events
    • Schools
    • Businesses
    • General Community
  • Reaching out to the media to share your story
  • Advocating in Washington D.C. during Rare Disease Week


kym-headshot-sizedKym Kilbourne

VP, Patient Advocacy




carrieheadshotCarrie Ostrea

Manager, Advocacy



jaymie-headshot-sizedJaymie Rodems

Manager, Marketing & Communications



amy-headshot-sizedAmy Grover

Director, Operations