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UID:18361-1738398600-1738429200@bdsrafoundation.org
SUMMARY:Board of Directors Quarterly Meeting
DESCRIPTION:BDSRA’s Board of Directors will have its quarterly meeting in person on Saturday\, February 1\, 2025\, from 8:30 AM to 5 PM CST in Chicago. 
URL:https://bdsrafoundation.org/event/bdsra-board-of-directors-quarterly-meeting/
LOCATION:Zoom
CATEGORIES:Board Meeting
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250211T183000
DTEND;TZID=America/New_York:20250211T193000
DTSTAMP:20260423T235637
CREATED:20250121T182125Z
LAST-MODIFIED:20250204T163215Z
UID:20679-1739298600-1739302200@bdsrafoundation.org
SUMMARY:Valentine's Day Party
DESCRIPTION:Love is in the air\, and so is fun! The BDSRA Foundation is excited to invite Batten families to a Valentine’s Day party via Zoom on Tuesday\, February 11\, at 6:30 PM EST. It’s a special chance for parents\, siblings\, and their loved one(s) with Batten to come together for a night of joy\, creativity\, and community. \n💐 What’s in store? \n\nA story to enjoy together\nA fun craft activity to spark creativity (don’t worry\, we’ve got the supplies covered!)\n\nParty hits have SOLD OUT. You may still register and join the party if you didn’t reserve a party kit! \nOnce you’ve registered\, we’ll email you the Zoom link to join the fun. So grab your family\, and let’s make this virtual party one to remember! 💌 \nClick here to register.
URL:https://bdsrafoundation.org/event/valentines-day-party-2/
LOCATION:Zoom
CATEGORIES:Holidays,SIBs
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DTSTART;VALUE=DATE:20250224
DTEND;VALUE=DATE:20250227
DTSTAMP:20260423T235637
CREATED:20250116T232917Z
LAST-MODIFIED:20250221T214158Z
UID:20670-1740355200-1740614399@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:UPDATE: FDA-NIH Rare Disease Day has been postponed. \nClick here for Rare Disease Week on Capitol Hill information.
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill-fda-nih-rare-disease-day/
CATEGORIES:Advocacy Event
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