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Oregon Rare Action Network Workshop

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December 08, 2018
1:00 pm - 3:00 pm

North Portland Library,  Meeting Room

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Please join the Oregon Rare Action Network 

Saturday, December 8, 2018

1:00pm-3:00pm (PST)

North Portland Library,  Meeting Room, 512 N Killingsworth St., Portland, OR 97217
Learn about NORD and the Rare Action Network, connect with other rare disease advocates within the state. Learn about key issues we’re facing here in Oregon and how to speak to our elected officials to advocate for change.
Oregon Rare Action Network is working on improving the lives of rare disease patients and their families within the state.
1:00-1:30—Introduction and discuss NORD and the Rare Action Network
1:30-2:30— Go over policies concerning the rare disease community and teach how to contact your legislatures.
Review how to develop your “elevator Pitch”.
2:30-3:00— Q & A

Please RSVP to Penny FitzMaurice at

NORD Links


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