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X-WR-CALNAME:WI Rare
X-ORIGINAL-URL:https://wirare.org
X-WR-CALDESC:Events for WI Rare
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CREATED:20251230T144331Z
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UID:6329-1767866400-1767873600@wirare.org
SUMMARY:Copay Press Conference
DESCRIPTION:Help raise the flag about how important copays are for people living with rare disease. (Senate Bill 203) \nJoin WI Rare and fellow advocates at the Wisconsin State Capitol on January 8 for a short\, but powerful\, press conference highlighting the real impact of copays on our community. \nTime: 10:00 AM CST \nLet’s pack the room in solidarity. Copays can affect anyone — so bring your friends\, bring your family\, and show the press just how much this issue matters to us. \nAfter the press conference:\nYou’re invited to continue the conversation at a Rare Disease Meetup at Michelangelo’s Coffee Shop\, just across from the Capitol on State Street. \nRSVP today! \nWe can’t wait to advocate alongside you. Together\, let’s make sure copays count.
URL:https://wirare.org/event/copay-press-conference/
LOCATION:Madison WI State Capitol\, 2 E Main St\, Madison\, WI\, 53702\, United States
CATEGORIES:In-person
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251213T170000
DTEND;TZID=America/Chicago:20251213T203000
DTSTAMP:20260414T134634
CREATED:20251027T201446Z
LAST-MODIFIED:20251027T201446Z
UID:6255-1765645200-1765657800@wirare.org
SUMMARY:Dancing In The Light
DESCRIPTION:In honor of our sweet Kora’s heavenly birthdays\, Into The Light wants to provide a special annual event for families who have a child (birth-18 years old) living with a rare or complex medical diagnosis. A time where families have an extra way to celebrate their child who has overcome many challenges and continues to display strength in their everyday life.\n\nA free evening for the whole family full of food\, music\, entertainment\, and “dancing in the light”. To add to the elegant atmosphere\, we would love for everyone attending to dress in their fanciest\, ball-like attire\, but please know this is not required. Although this event is intended for immediate family\, we would love for you to bring along those special people in your lives that would make your family’s evening more precious.\n\nPlease RSVP by December 8th\, 2025 via our website link so we can plan accordingly:
URL:https://wirare.org/event/dancing-in-the-light/
LOCATION:West Creek Event Center\, S7650 State Rd 37\, Eau Claire\, WI\, United States
ORGANIZER;CN="Into the Light":MAILTO:in2tlight@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251108T060000
DTEND;TZID=America/Chicago:20251108T140000
DTSTAMP:20260414T134634
CREATED:20251029T150356Z
LAST-MODIFIED:20251030T190640Z
UID:6262-1762581600-1762610400@wirare.org
SUMMARY:Living Rare\, Living Stronger in WI
DESCRIPTION:Milwaukee County Zoo \nRegister at the link below! \nIf you have any questions\, please email events@rarediseases.org
URL:https://wirare.org/event/living-rare-living-stronger-in-wi/
LOCATION:Milwaukee County Zoo\, 10001 W Bluemound Rd\, Milwaukee\, WI\, 53226\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250911T080000
DTEND;TZID=America/Chicago:20250911T160000
DTSTAMP:20260414T134634
CREATED:20250723T134441Z
LAST-MODIFIED:20250727T211844Z
UID:6108-1757577600-1757606400@wirare.org
SUMMARY:WI Rare Disease Advocacy Day
DESCRIPTION:OPEN THE INVITATION TO ACCESS THE REGISTRATION FORM AT THE BOTTOM OF THE PAGE. \nYou are invited to join us at the Madison State Capitol for our Rare Disease Advocacy Day! Check in will be from 8-9 am. Register: https://wirare.org/capitol-day/
URL:https://wirare.org/event/wi-rare-disease-advocacy-day/
LOCATION:Madison WI State Capitol\, 2 E Main St\, Madison\, WI\, 53702\, United States
ATTACH;FMTTYPE=image/png:https://wirare.org/wp-content/uploads/2025/07/monday.png
ORGANIZER;CN="WI Rare":MAILTO:anna@wirare.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250227
DTEND;VALUE=DATE:20250301
DTSTAMP:20260414T134635
CREATED:20250121T192246Z
LAST-MODIFIED:20250121T192246Z
UID:5890-1740697200-1740783599@wirare.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day will be held on February 28th. Do you know of an organization in Wisconsin that is hosting a Rare Disease event? Let us know so that we can promote it!
URL:https://wirare.org/event/rare-disease-day/
LOCATION:WI
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250220T173000
DTEND;TZID=America/Chicago:20250220T183000
DTSTAMP:20260414T134635
CREATED:20250218T171547Z
LAST-MODIFIED:20250218T171555Z
UID:5919-1740072600-1740076200@wirare.org
SUMMARY:Rare Disease Storytime
DESCRIPTION:
URL:https://wirare.org/event/rare-disease-storytime/
LOCATION:CI Pediatric Therapy Centers\, 535 Southing Grange Suite 400\, Cottage Grove\, WI\, United States
CATEGORIES:In-person
ATTACH;FMTTYPE=image/png:https://wirare.org/wp-content/uploads/2025/02/Picture7.png
ORGANIZER;CN="WI Rare":MAILTO:anna@wirare.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250130T130000
DTEND;TZID=America/Chicago:20250130T140000
DTSTAMP:20260414T134635
CREATED:20250121T185458Z
LAST-MODIFIED:20250121T185458Z
UID:5886-1738242000-1738245600@wirare.org
SUMMARY:Navigating the Genetics Maze
DESCRIPTION:Join us as our genetic counseling interns explore how to navigate the maze of genetics testing for rare diseases. All are welcome to this free virtual meeting! Register online:  https://us02web.zoom.us/meeting/register/28aXUU9oQTqRcJ9oR8Y_qA
URL:https://wirare.org/event/navigating-the-genetics-maze/
LOCATION:Online Zoom Event
ORGANIZER;CN="WI Rare":MAILTO:anna@wirare.org
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