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X-WR-CALNAME:- Rare Action Network®
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X-WR-CALDESC:Events for - Rare Action Network®
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DTSTART:20250101T000000
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DTSTART;TZID=UTC:20260507T180000
DTEND;TZID=UTC:20260507T200000
DTSTAMP:20260430T132732
CREATED:20260429T035505Z
LAST-MODIFIED:20260429T040212Z
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SUMMARY:Rare Disease Community Meet Up
DESCRIPTION:Stop by Greenwood Brewing on Thursday\, May 7 between 6pm to 8pm for a rare disease community meet up! This is a wonderful chance to connect with one another over craft beer and finger foods in a relaxed setting. \nGreenwood Brewing will feature a special Zebra Hop brew for the meet up. Zebra Hop was created by Jonathan Kowalske of Component Brewing\, whose son\, Mac\, was diagnosed with Malan Syndrome right after they opened their brewery. Greenwood Brewing is generously donating a portion of proceeds from the event to benefit Eric Haapaoja’s Running for Rare fundraiser for NORD! Eric lives in Arizona and is running the Cocodona 250 with a charity bib to support NORD (yes\, you read that right\, he is running 250 miles from Black Canyon City to Flagstaff and raising money to fuel NORD’s mission). Eric’s family is personally impacted by rare disease\, and he is taking on the brutal Cocodona 250 to give back and help other families impacted by rare diseases. \nLet us know you are coming: https://www.surveymonkey.com/r/FTZJZ26
URL:https://rareaction.org/event/rare-disease-community-meet-up/
LOCATION:Greenwood Brewing\, 922 N 5th St\, Phoenix\, AZ\, 85004\, United States
ATTACH;FMTTYPE=image/png:https://rareaction.org/wp-content/uploads/2026/04/Benefiting-the-National-Organization-for-Rare-Disorders-NORD®.png
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