BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//www.barthsyndrome.org//NONSGML kigkonsult.se iCalcreator 2.30.10/
 /
CALSCALE:GREGORIAN
METHOD:PUBLISH
UID:0ee341bd-57ea-4676-82b2-658e20e39d0a
X-WR-CALDESC:Since 2017\, Global Genes and the EveryLife Foundation have pa
 rtnered to host RARE on the Road events around the country\, developing th
 e next generation of advocacy leaders. This year\, due to the coronavirus 
 crisis\, we are hosting RARE on the Road virtually!\n\nWith feedback from 
 the community\, we designed a unique two-part virtual experience that will
  empower attendees to build their skill set\, enhance their knowledge\, en
 gage in advocacy\, and network with their local rare disease community.\n
 \nThese events are geared toward rare disease community members who want t
 o tell their rare disease story\, make an impact in the lives of others\, 
 and connect locally with fellow rare disease community members. Register f
 or Part I\, Part II or both!\n\nPart I: Interactive Webinar – Tuesday\, Ju
 ne 23rd\, 11:00 a.m. ET – 1:30 p.m. ET\n\nParticipants will engage in inte
 ractive tutorials on how to tell their rare story and how to get involved 
 in advocacy. This event is open to all rare disease community members and 
 will feature special guest speakers\, including a rare disease patient and
  a policy expert.\n\nPart II: RARE Chats – Wednesday\, June 24th\, 11:00 a
 .m. ET – 12:00 p.m. ET\n\nMeet local rare disease community members with t
 his unique video chat experience. This session offers participants an oppo
 rtunity to learn from local rare disease leaders\, share ideas\, and form 
 lasting relationships with their peers.\n\nThis session will focus on issu
 es and resources specific to California\, Louisiana\, Minnesota\, and Nort
 h Carolina\, but residency is not required to register (industry members a
 re not allowed).\n\nWe are seeking volunteer RARE Chat moderators! Please 
 indicate interest in the registration application.\n\nPlease note: Space i
 s limited and is first come\, first served. The deadline to register for P
 art II: RARE Chats is June 15\, or until all available spots are filled. I
 f at that time you’d like to be added to our RARE Chats wait list\,  you c
 an send us an email at events@globalgenes.org.\n\nDue to the generous supp
 ort of our sponsors\, participants of either event will receive a RARE Car
 e Package\, including a RARE on the Road t-shirt and other merchandise. \n
 \nPlease Note: In order to receive a physical RARE Care Package\, you must
  register by June 1. Anyone registering after June 1\, will receive a digi
 tal\, downloadable RARE Care Package instead. RARE Care packages can only 
 be shipped within the U.S. International participants will receive a digit
 al\, downloadable RARE Care Package. T-shirt not included.
X-WR-RELCALID:7a67b887ebe6fbc11b572d0c37b78a7b
X-WR-TIMEZONE:America/New_York
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:STANDARD
TZNAME:EST
DTSTART:20191103T020000
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
RDATE:20201101T020000
RDATE:20211107T020000
END:STANDARD
BEGIN:DAYLIGHT
TZNAME:EDT
DTSTART:20200308T020000
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
RDATE:20210314T020000
END:DAYLIGHT
END:VTIMEZONE
BEGIN:VEVENT
UID:fd05a2e0-39f8-4b14-b10c-004e9a851d31
DTSTAMP:20260428T191755Z
DESCRIPTION:Since 2017\, Global Genes and the EveryLife Foundation have par
 tnered to host RARE on the Road events around the country\, developing the
  next generation of advocacy leaders. This year\, due to the coronavirus c
 risis\, we are hosting RARE on the Road virtually!\n\nWith feedback from t
 he community\, we designed a unique two-part virtual experience that will 
 empower attendees to build their skill set\, enhance their knowledge\, eng
 age in advocacy\, and network with their local rare disease community.\n\n
 These events are geared toward rare disease community members who want to 
 tell their rare disease story\, make an impact in the lives of others\, an
 d connect locally with fellow rare disease community members. Register for
  Part I\, Part II or both!\n\nPart I: Interactive Webinar – Tuesday\, June
  23rd\, 11:00 a.m. ET – 1:30 p.m. ET\n\nParticipants will engage in intera
 ctive tutorials on how to tell their rare story and how to get involved in
  advocacy. This event is open to all rare disease community members and wi
 ll feature special guest speakers\, including a rare disease patient and a
  policy expert.\n\nPart II: RARE Chats – Wednesday\, June 24th\, 11:00 a.m
 . ET – 12:00 p.m. ET\n\nMeet local rare disease community members with thi
 s unique video chat experience. This session offers participants an opport
 unity to learn from local rare disease leaders\, share ideas\, and form la
 sting relationships with their peers.\n\nThis session will focus on issues
  and resources specific to California\, Louisiana\, Minnesota\, and North 
 Carolina\, but residency is not required to register (industry members are
  not allowed).\n\nWe are seeking volunteer RARE Chat moderators! Please in
 dicate interest in the registration application.\n\nPlease note: Space is 
 limited and is first come\, first served. The deadline to register for Par
 t II: RARE Chats is June 15\, or until all available spots are filled. If 
 at that time you’d like to be added to our RARE Chats wait list\,  you can
  send us an email at events@globalgenes.org.\n\nDue to the generous suppor
 t of our sponsors\, participants of either event will receive a RARE Care 
 Package\, including a RARE on the Road t-shirt and other merchandise. \n\n
 Please Note: In order to receive a physical RARE Care Package\, you must r
 egister by June 1. Anyone registering after June 1\, will receive a digita
 l\, downloadable RARE Care Package instead. RARE Care packages can only be
  shipped within the U.S. International participants will receive a digital
 \, downloadable RARE Care Package. T-shirt not included.
DTSTART;TZID=America/New_York:20200623T110000
DTEND;TZID=America/New_York:20200623T133000
LOCATION:CVent
SUMMARY:Rare on the Road Part I: Interactive Webinar
END:VEVENT
END:VCALENDAR