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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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DTSTART:20210314T070000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220222
DTEND;VALUE=DATE:20220303
DTSTAMP:20260617T074658
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220302T190000
DTEND;TZID=America/New_York:20220302T200000
DTSTAMP:20260617T074658
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:20220310T173000
DTEND;TZID=America/New_York:20220310T183000
DTSTAMP:20260617T074658
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:20220322T190000
DTEND;TZID=America/New_York:20220322T200000
DTSTAMP:20260617T074658
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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220329T170000
DTEND;TZID=America/New_York:20220329T180000
DTSTAMP:20260617T074658
CREATED:20220224T165053Z
LAST-MODIFIED:20220309T162751Z
UID:13717-1648573200-1648576800@bdsrafoundation.org
SUMMARY:Ask-An-Expert Rare & Ready: Clearing Hurdles to Access Rare Disease Therapies
DESCRIPTION:Join us to learn more about the Rare & Ready initiative! \nSome states are developing detrimental strategies to slow or limit patients’ access to newly approved rare disease therapies. Learn about the programmatic obstacles put into place by Medicaid fee-for-service (FFS) and Medicaid managed care organizations (MCOs) and what families can do to clear these hurdles. \nTo Register: Click Here \n  \n 
URL:https://bdsrafoundation.org/event/ask-an-expert-rare-ready-clearing-hurdles-to-access-rare-disease-therapies/
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
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