BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Patient Worthy - ECPv5.12.4//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Patient Worthy
X-ORIGINAL-URL:https://patientworthy.com
X-WR-CALDESC:Events for Patient Worthy
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20180311T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20181104T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180718
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152811
CREATED:20180412T212506Z
LAST-MODIFIED:20180412T212506Z
UID:87871-1531872000-1532303999@patientworthy.com
SUMMARY:SOFT's SOFT Medical & Family Conference
DESCRIPTION:The 32nd Annual Medical & Family Conference\nThis conference will be a chance for the trisomy 18 patient community to come together\, to share stories\, spread support\, and build community. \nIn addition\, participants will learn the latest in trisomy 18 research and treatments\, and will have the opportunity to learn new strategies for managing trisomy 18. \nRegistration\n$135/$85 (Adults/Child)\nPicnic: $35/$25\nThursday: $62\nChildren under age 5 are free.
URL:https://patientworthy.com/event/softs-soft-medical-family-conference/
LOCATION:Hotel Red Lion\, 3321 S 72nd St\, Omaha\, NE\, United States
CATEGORIES:Rare Disease,Trisomy 18
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180718
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152811
CREATED:20180412T220658Z
LAST-MODIFIED:20180412T220658Z
UID:87878-1531872000-1532303999@patientworthy.com
SUMMARY:Hunter's Hope's 2018 Family Symposium
DESCRIPTION:Freedom & Hope\nThis event will be a chance for patients and families affected by Krabbe disease and other leukodystrophies to come together for to build community\, spread hope\, and share stories in an environment free from judgement. \nThe family conference will be preceded by a invitation-only medical symposium that will present that latest research and treatment updates for Krabbe disease and other leukodystrophies. \nFor registration information\, please contact Hunter’s Hope via email at symposium@huntershope.org.
URL:https://patientworthy.com/event/hunters-hopes-2018-family-symposium/
LOCATION:Holiday Valley Resort\, 6557 Holiday Valley Road\, Ellicottville\, United States
CATEGORIES:Krabbe Disease,Rare Disease
ORGANIZER;CN="Hunter%27s%20Hope":MAILTO:info@huntershope.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180719
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152811
CREATED:20180411T155120Z
LAST-MODIFIED:20180411T155120Z
UID:87672-1531958400-1532303999@patientworthy.com
SUMMARY:The Dravet Syndrome Foundation's 2018 DSF Conference
DESCRIPTION:2018 Biennial DSF Family and Professional Conference\nDon’t miss this three day conference that will allow caregivers\, medical\, professionals\, and families to converge\, network\, and learn. \nDravet syndrome experts will present the latest in research\, treatment\, and day to day management of this condition. \nFamilies will have the opportunity to build community\, share stories and advice\, and empower one another. \nRegistration (ends July 13th)\nFamilies/caregivers: $200 ($100 single day)\nProfessionals: $250 ($125 single day)
URL:https://patientworthy.com/event/the-dravet-syndrome-foundations-2018-dsf-conference/
LOCATION:Children’s Hospital Colorado\, 13123 East 16th Avenue\, Aurora\, CO\, United States
CATEGORIES:Dravet Syndrome,Rare Disease
ORGANIZER;CN="Dravet%20Syndrome%20Foundation":MAILTO:info@dravetfoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180719
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152811
CREATED:20180413T201930Z
LAST-MODIFIED:20180413T201930Z
UID:87983-1531958400-1532303999@patientworthy.com
SUMMARY:The Batten Disease Support and Research Association's Family Conference
DESCRIPTION:The 2018 BDSRA Family Conference\n“Walk the Line For a Cure”\nThis event is an invitation for the Batten disease patient community\, including advocates\, families\, and patients themselves\, to converge and learn the latest in disease research\, best practices\, and treatment. \nRegistration ends June 27th\, 2018. To learn more info\, email Sarab@SSWMeetings.com \n 
URL:https://patientworthy.com/event/batten-disease-support-research-associations-family-conference/
LOCATION:Nashville Airport Marriott\, 600 Mariott Drive\, Nashville\, TN\, 37214\, United States
CATEGORIES:Batten Disease,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180720
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152812
CREATED:20180413T203817Z
LAST-MODIFIED:20180413T203817Z
UID:87990-1532044800-1532303999@patientworthy.com
SUMMARY:Beckwith-Wiedemann Children's Foundation International's BWS Family Conference
DESCRIPTION:BWS Family Conference 2018\nThis event will be a chance for families affected by BWS to come together\, build community\, share stories\, and network with one another. \nIn addition\, the conference will feature individualized clinical evaluations with a variety of treatment specialists. \nRegistration: $100
URL:https://patientworthy.com/event/beckwith-wiedemann-childrens-foundation-internationals-family-conference/
LOCATION:Nicklaus Children’s Hospital\, 3100 S.W. 62nd Ave\, Miami\, FL\, United States
CATEGORIES:Beckwith-Wiedemann Syndrome,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180720
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T152812
CREATED:20180413T210039Z
LAST-MODIFIED:20180413T210039Z
UID:88006-1532044800-1532303999@patientworthy.com
SUMMARY:The Moebius Syndrome Foundation's 2018 Conference
DESCRIPTION:The 13th Moebius Syndrome Foundation Conference\nThis event will be an opportunity for patients and families to learn the latest info from Moebius syndrome experts. \nFamilies will learn about a variety of subjects\, such as managing potential complications\, the latest in Moebius syndrome research\, and more. \nRegistration\nEarly bird (until 4/30)\n$280/$230/$150 (Adults/teens/children)\nRegular (5/1-7/13)\n$315/$275/$190\n 
URL:https://patientworthy.com/event/the-moebius-syndrome-foundations-2018-conference/
LOCATION:The Vinoy Renaissance St. Petersburg\, 501 5th Avenue NE\, St. Petersburg\, VA\, United States
CATEGORIES:Moebius Syndrome,Rare Disease
ORGANIZER;CN="Moebius%20Syndrome%20Foundation":MAILTO:info@moebiussyndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180722
DTEND;VALUE=DATE:20180726
DTSTAMP:20261113T152812
CREATED:20180413T211647Z
LAST-MODIFIED:20180413T211647Z
UID:88024-1532217600-1532563199@patientworthy.com
SUMMARY:Debra of America's 2018 Debra Care Conference
DESCRIPTION:This event will be an opportunity for epidermyolsis bullosa patients and their families to network with one another. \nParticipants will also be able to learn about the latest in epidermyolsis bullosa treatment and research. \nRegistration\nEB families: $600\nGeneral attendee: $900
URL:https://patientworthy.com/event/debra-of-americas-2018-debra-care-conference/
LOCATION:Sheraton Grand Wild Horse Pass\, 5594 W Wild Horse Pass Blvd\, Phoenix\, AZ\, United States
CATEGORIES:Epidermyolsis Bullosa,Rare Disease
ORGANIZER;CN="Debra%20of%20America":MAILTO:staff@debra.org
END:VEVENT
END:VCALENDAR