BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Batten Disease Support & Research Association - ECPv6.15.12.2//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240214T183000
DTEND;TZID=America/New_York:20240214T193000
DTSTAMP:20260425T055652
CREATED:20240124T110005Z
LAST-MODIFIED:20240209T171255Z
UID:18356-1707935400-1707939000@bdsrafoundation.org
SUMMARY:Valentine's Day Party
DESCRIPTION:LOVE IS IN THE AIR! It’s time to mark your calendars for the first BDSRA holiday party of 2024! \nBDSRA will be hosting a virtual Valentine’s Day party on Wednesday\, February 14\, at 6:30 p.m. EST. This is a time for Batten SIBs\, parents\, and affected family members to gather for a fun evening celebrating Valentine’s Day with a party kit that includes a story and craft! \nThe deadline to order party kits has passed\, but you may still attend the party by registering. You will receive the Zoom link to join the party after registering. \nClick here to register!
URL:https://bdsrafoundation.org/event/valentines-day-party/
CATEGORIES:Holidays,SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240225
DTEND;VALUE=DATE:20240229
DTSTAMP:20260425T055652
CREATED:20240113T010456Z
LAST-MODIFIED:20240118T152132Z
UID:18340-1708819200-1709164799@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:For complete information on this event\, including registration\, please visit the EveryLife Foundation for Rare Diseases website. \n“Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come. \nHosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases)\, this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. No matter one’s connection to rare disease or their advocacy experience level\, all are welcome.”
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T090000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260425T055652
CREATED:20240118T145747Z
LAST-MODIFIED:20240118T152045Z
UID:18346-1709197200-1709226000@bdsrafoundation.org
SUMMARY:Rare Disease Day at NIH
DESCRIPTION:For complete information on this event\, including registration\, click here. \n“Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Thursday\, Feb. 29\, 2024\, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions\, rare diseases stories\, in-person exhibitors and scientific posters\, and an art exhibition. The event is free and open to the public.”
URL:https://bdsrafoundation.org/event/rare-disease-day-at-nih/
CATEGORIES:Advocacy Event
END:VEVENT
END:VCALENDAR