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X-WR-CALNAME:Batten Disease Support & Research Association
X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220322T190000
DTEND;TZID=America/New_York:20220322T200000
DTSTAMP:20260421T153046
CREATED:20220301T140531Z
LAST-MODIFIED:20220301T140531Z
UID:13733-1647975600-1647979200@bdsrafoundation.org
SUMMARY:Newly Diagnosed Meet and Greet
DESCRIPTION:A place for new families to meet one another\, learn more about BDSRA and our mission\, and discover opportunities for support throughout their child’s diagnosis. Register by visiting: https://web.charityengine.net/NewlyDiagnosed_Mar22/
URL:https://bdsrafoundation.org/event/newly-diagnosed-meet-and-greet/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220310T173000
DTEND;TZID=America/New_York:20220310T183000
DTSTAMP:20260421T153046
CREATED:20220118T204308Z
LAST-MODIFIED:20220309T162208Z
UID:13657-1646933400-1646937000@bdsrafoundation.org
SUMMARY:Stay Golden: St. Patrick's Day Party
DESCRIPTION:Registration is now open for BDSRA’s Stay Golden Saint Patrick’s Day Party taking place Thursday\, March 10th at 5:30p EST! Join the BDSRA team for a jolly good party with crafts\, games\, and a festive book! Register by March 1st. to receive a St .Patrick’s Party Box! (Boxes for U.S Families only). You can register to receive a box or just attend the virtual party. We would be lucky to see you there! Register here: https://web.charityengine.net/StayGoldenParty
URL:https://bdsrafoundation.org/event/bdsra-stay-golden-st-patricks-day-party-sibs-cln-ncl/
CATEGORIES:Seasonal Events
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220302T190000
DTEND;TZID=America/New_York:20220302T200000
DTSTAMP:20260421T153046
CREATED:20220224T173526Z
LAST-MODIFIED:20220224T173622Z
UID:13724-1646247600-1646251200@bdsrafoundation.org
SUMMARY:Rare Disease Week Debrief Party
DESCRIPTION:After a week of advocating for our Batten Community\, join BDSRA for a live debrief with staff and others who participated during this week of advocacy. We cannot wait to hear all your stories and victories! \nTo Register Visit: https://web.charityengine.net/RDWParty
URL:https://bdsrafoundation.org/event/rare-disease-week-debrief-party/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220222T190000
DTEND;TZID=America/New_York:20220222T200000
DTSTAMP:20260421T153046
CREATED:20220118T203348Z
LAST-MODIFIED:20220118T203349Z
UID:13649-1645556400-1645560000@bdsrafoundation.org
SUMMARY:Quarterly Grief Chat
DESCRIPTION:BDSRA understands that each stage of this journey is different\, and we are here for you. This is an opportunity for loved ones to gather\, share and support one another. Please consider joining us at 7:00pm EST on February 22nd\, 2022. Join the event with the zoom link that will be sent via email upon registration. Register here: https://web.charityengine.net/GriefChat_Feb2022/
URL:https://bdsrafoundation.org/event/quarterly-grief-chat/
CATEGORIES:Grief Chat
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220222
DTEND;VALUE=DATE:20220303
DTSTAMP:20260421T153046
CREATED:20220118T203732Z
LAST-MODIFIED:20220118T203732Z
UID:13654-1645488000-1646265599@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues\, meet other advocates\, and share their unique stories with legislators. \n\nRare Disease Week
URL:https://bdsrafoundation.org/event/bdsra-rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220221T170000
DTEND;TZID=America/New_York:20220221T180000
DTSTAMP:20260421T153046
CREATED:20220113T190922Z
LAST-MODIFIED:20220215T163319Z
UID:13620-1645462800-1645466400@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Research Edition
DESCRIPTION:Registration is now open! Join us for Ask-An-Expert: Research Edition on Monday\, February 21st at 5p EST with Dr. David Pearce. Ask questions and learn about research updates important to our Batten Community during this LIVE Q&A. Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the link provided.
URL:https://bdsrafoundation.org/event/aae222/
LOCATION:Zoom
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220118T180000
DTEND;TZID=America/New_York:20220118T190000
DTSTAMP:20260421T153046
CREATED:20220118T203002Z
LAST-MODIFIED:20220118T203002Z
UID:13644-1642528800-1642532400@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Clinical Edition
DESCRIPTION:Ask-An-Expert: Clinical Edition | January 18th | 6p EST\nLearn about clinical updates and ask questions during this LIVE Q&A with Dr. Erika Augustine. Register here: https://web.charityengine.net/ClinicalEdition_Jan2022/
URL:https://bdsrafoundation.org/event/ask-an-expert-clinical-edition/
CATEGORIES:Ask-An-Expert
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
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