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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
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TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20181104T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20180716
DTEND;VALUE=DATE:20180722
DTSTAMP:20261113T151724
CREATED:20180412T151652Z
LAST-MODIFIED:20180412T151652Z
UID:87818-1531699200-1532217599@patientworthy.com
SUMMARY:The Barth Syndrome Foundation's Scientific\, Medical\, and Family Conference
DESCRIPTION:THE 9TH INTERNATIONAL SCIENTIFIC\, MEDICAL & FAMILY CONFERENCE\n“Power Up!”\nThis event will be a convergence of health providers\, researchers\, and industry leadership to present the latest research and treatments in the field of Barth syndrome to the patient community. \nThe event will also be an opportunity for Barth syndrome patients and their relatives to network and share their experiences with one another. \n 
URL:https://patientworthy.com/event/barth-syndrome-foundations-scientific-medical-family-conference/
LOCATION:Hilton Clearwater Beach Hotel\, 400 MANDALAY AVENUE\, Clearwater\, FL\, United States
CATEGORIES:Barth Syndrome,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180718
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T151724
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:20261113T151724
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:20261113T151724
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:20180722
DTSTAMP:20261113T151724
CREATED:20180412T225933Z
LAST-MODIFIED:20180412T225933Z
UID:87891-1531958400-1532217599@patientworthy.com
SUMMARY:The Noonan Syndrome Foundation's 2018 Conference
DESCRIPTION:The 2018 Noonan Syndrome Foundation Conference\nThe event will be an opportunity for Noonan syndrome patients and their families to share their experiences with one another and build community. This will also be a chance to learn about the latest news in research and treatment. \nFamilies can also learn about day to day disease management and how to cope with specific symptoms with direct consultations with Noonan syndrome experts. \nRegistration\n$200/$125 (Adults/children)
URL:https://patientworthy.com/event/the-noonan-foundations-2018-conference/
LOCATION:Pointe Hilton Squaw Peak Resort\, 7677 North 16th Street\, Phoenix\, AZ\, United States
CATEGORIES:Noonan Syndrome,Rare Disease
ORGANIZER;CN="Noonan%20Syndrome%20Foundation":MAILTO:info@teamnoonan.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180719
DTEND;VALUE=DATE:20180723
DTSTAMP:20261113T151724
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;TZID=America/New_York:20180719T080000
DTEND;TZID=America/New_York:20180721T170000
DTSTAMP:20261113T151724
CREATED:20170908T171344Z
LAST-MODIFIED:20170908T171344Z
UID:61392-1531987200-1532192400@patientworthy.com
SUMMARY:International Symposium on Usher Syndrome and 10th Annual Usher Connections Conference
DESCRIPTION:Put Europe on your calendar for 2018! Usher patients\, researchers and family members welcome to the two-day Symposium in July. For more information\, contact ush2018@usher-syndrome.org
URL:https://patientworthy.com/event/international-symposium-usher-syndrome-10th-annual-usher-connections-conference/
LOCATION:Atrium Conference Center\, Flugplatzstraße 44\, Mainz\, Mainz\, 55126 \, Germany
CATEGORIES:Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20180719T120000
DTEND;TZID=America/New_York:20180721T170000
DTSTAMP:20261113T151724
CREATED:20180412T223154Z
LAST-MODIFIED:20180412T223154Z
UID:87886-1532001600-1532192400@patientworthy.com
SUMMARY:PRISMS' International SMS Conference
DESCRIPTION:The 10th International SMS Conference\n“Honoring the Past\, Treasuring the Past\, Shaping the Future”\nThe event will be an opportunity for SMS patients and their families to share their experiences with one another and build community. \nThis will also be a chance to learn about the latest news in research and treatment. Families can also learn about day to day disease management and how to cope with specific symptoms. \nRegistration\n$75/$100/$260/$315\nPatient/child/adult/professional
URL:https://patientworthy.com/event/prisms-international-sms-conference/
LOCATION:Pittsburgh Marriott City Center\, 112 Washington Place\, Pittsburgh\, PA\, United States
CATEGORIES:Rare Disease,Smith-Magenis Syndrome
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