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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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BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20181104T060000
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END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180624
DTEND;VALUE=DATE:20180629
DTSTAMP:20261114T162156
CREATED:20180406T161151Z
LAST-MODIFIED:20180406T161151Z
UID:87248-1529798400-1530230399@patientworthy.com
SUMMARY:The Oley Foundation's Annual Conference
DESCRIPTION:The 2018 Oley Consumer/Clinician Conference\nThis conference will be an opportunity for patients with short bowel syndrome or other conditions that must use intravenous nutrition and feeding tubes to learn more about these therapies. \nIn addition\, participants will be able to consult with care providers and clinicians in order to get their questions answered. \nRegistration is free for caregivers\, consumers\, faculty\, and family members. \nRoom reservations\nGeneral participants: $164/night\nExhibitors: $229/night
URL:https://patientworthy.com/event/the-oley-foundations-annual-conference/
LOCATION:The Peabody Hotel\, 149 UNION AVENUE\, Memphis\, TN\, United States
CATEGORIES:Rare Disease,Short Bowel Syndrome
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180627
DTEND;VALUE=DATE:20180701
DTSTAMP:20261114T162156
CREATED:20180403T220047Z
LAST-MODIFIED:20180403T220047Z
UID:87006-1530057600-1530403199@patientworthy.com
SUMMARY:International Federation of Psoriasis Association's World Psoriasis & Psoriatic Arthritis Conference
DESCRIPTION:The 5th Annual World Psoriasis & Psoriatric Arthritis Conference\nThis event will be an opportunity help increase the global awareness around psoriasis and psoriatric arthritis. Participants will share and learn about the latest clinical and research developments. \nThis conference will also emphasize the patient perspective and encourage new ideas for research. \nRegistration\nHealthcare professionals: 6\,590 SEK/8\,190 SEK* (late/on-site)\nCaregiving professionals: 5\,690 SEK/7\,090 SEK (late/on-site)\nMembers: 4\,890 SEK\nStudents: 2\,990 SEK\nSEK= Swedish krona
URL:https://patientworthy.com/event/international-federation-psoriasis-world-psoriatic-arthritis-conference/
LOCATION:Stockholm Waterfront Conference Centre\, Nils Ericsons Plan 4\, Stockholm\, Sweden
ORGANIZER;CN="International%20Federation%20of%20Psoriasis%20Associations":MAILTO:info@ifpa-pso.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180627
DTEND;VALUE=DATE:20180630
DTSTAMP:20261114T162156
CREATED:20180406T182831Z
LAST-MODIFIED:20180406T182831Z
UID:87276-1530057600-1530316799@patientworthy.com
SUMMARY:The SATB2 Gene Foundation's 2018 International Conference
DESCRIPTION:The 2nd Annual International Conference\nThis conference is open to SATB2-associated syndrome patients\, their families\, caregivers\, and medical experts. \nThe event will be an opportunity to share the latest news in research and treatment for SATB2-associated syndrome. \nRegistration closed for this event on March 31st\, 2018.
URL:https://patientworthy.com/event/the-satb2-gene-foundations-2018-international-conference/
LOCATION:Homewood Suites by Hilton Little Rock Downtown\, 400 River Market Avenue\, Little Rock\, AR\, United States
CATEGORIES:Rare Disease,SATB2-Associated Syndrome
ORGANIZER;CN="SATB2%20Gene%20Foundation":MAILTO:allison@satb2gene.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180627
DTEND;VALUE=DATE:20180702
DTSTAMP:20261114T162156
CREATED:20180406T204620Z
LAST-MODIFIED:20180406T204620Z
UID:87310-1530057600-1530489599@patientworthy.com
SUMMARY:Parent Project Muscular Dystrophy's Annual Conference
DESCRIPTION:This is the largest international conference dedicated to Duchenne muscular dystrophy in the world. \nFamilies affected by Duchenne muscular dystrophy will gather to share stories\, network\, and build community. In addition\, attendees will get to learn about the latest research and treatment news. \nRegistration\nFamily rates: $150/$200/$250 (Early/Regular/Late)\nProfessional/Industry rates\nIndustry sponsor reps: $550/$600/$660 (Early/Regular/Late)\nNon-sponsor industry reps: $750/$800/$860\nAcademic/medical professionals: $325/$350/$425\nEarly registration: 3/22-4/22\nRegular registration: 4/23-5/23\nLate registration: 5/24-6/24
URL:https://patientworthy.com/event/parent-project-muscular-dystrophys-annual-conference/
LOCATION:The Phoenician\, 6000 East Camelback Road\, Scottsdale\, AZ\, United States
CATEGORIES:Duchenne Muscular Dystrophy,Rare Disease
ORGANIZER;CN="Parent%20Project%20Muscular%20Dystrophy":MAILTO:info@parentprojectmd.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180702
DTSTAMP:20261114T162156
CREATED:20180403T213341Z
LAST-MODIFIED:20180403T213341Z
UID:87000-1530144000-1530489599@patientworthy.com
SUMMARY:The CdLS Foundation's National Family Conference
DESCRIPTION:Biennial Conference\nThis conference will be a chance for families affected by Cornelia de Lange syndrome to interact one on one with medical experts\, build community with each other\, and learn how to manage the syndrome on a daily basis and face the challenges ahead. \nRegistration\nAdults: $390\nCaregivers: $260\nChildren: $205/FREE (age 3-17/age 2 and under)\nPatients: FREE\nOne-day professional: $110\nBanquet: $55/$35 (kids/adults)
URL:https://patientworthy.com/event/the-cdls-foundations-biennial-conference/
LOCATION:Marriott City Center\, 30 South 7th Street\, Minneapolis\, MN\, United States
CATEGORIES:Cornelia de Lange Syndrome,Rare Disease
ORGANIZER;CN="The%20CdLS%20Foundation":MAILTO:info@cdlsusa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180701
DTSTAMP:20261114T162156
CREATED:20180406T201555Z
LAST-MODIFIED:20180406T201555Z
UID:87306-1530144000-1530403199@patientworthy.com
SUMMARY:The United Mitochondrial Disease Foundation's Mitochondrial Medicine 2018
DESCRIPTION:This symposium will be an opportunity for medical researchers from around the world to present the latest data\, research\, and findings related to mitochondrial disease. \nThe event will also include content for patients and their families to learn more about mitochondrial disease. \nRegistration (patient/family program)\nEarly Bird/After May 31st\nIndividual registration: $115/$230\nFamily registration: $225/$450\nTeen sessions/event: $35/$45\nDaily rate: $42/$85\nIndustry reps (family program): $400/$500
URL:https://patientworthy.com/event/united-mitochondrial-disease-foundations-mitochondrial-medicine-2018/
LOCATION:Sheraton Music City Hotel\, 777 ​McGavock ​Pike\, Nashville\, TN\, United States
CATEGORIES:Mitochondrial Disease,Rare Disease
ORGANIZER;CN="United%20Mitochondrial%20Disease%20Foundation":MAILTO:info@umdf.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180701
DTSTAMP:20261114T162156
CREATED:20180406T215814Z
LAST-MODIFIED:20180406T215814Z
UID:87328-1530144000-1530403199@patientworthy.com
SUMMARY:The Hydrocephalus Association's National Conference
DESCRIPTION:The 15th National Conference on Hydrocephalus: HA Connect\nThis conference will be an opportunity for medical professionals\, caregivers\, patients\, and their families to converge and learn about the latest development in hydrocephalus research and treatment. \nIn addition\, participants will learn about what it takes to live and manage hydrocephalus on a daily basis. \nRegistration\n$380/$660/$940/$1220 (single/double/triple/four or more)
URL:https://patientworthy.com/event/the-hydrocephalus-associations-national-conference/
LOCATION:Renaissance Newport Beach\, 4500 MacArthur Boulevard\, Newport Beach\, CA\, United States
CATEGORIES:Hydrocephalus,Rare Disease
ORGANIZER;CN="Hydrocephalus%20Association":MAILTO:info@hydroassoc.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180701
DTSTAMP:20261114T162156
CREATED:20180407T140857Z
LAST-MODIFIED:20180407T140857Z
UID:87343-1530144000-1530403199@patientworthy.com
SUMMARY:The MSUD Family Support Group's 19th Biennial Group Symposium
DESCRIPTION:The MSUD Biennial Symposium\n  \nThis event will feature presentations of the latest maple syrup urine disease research and treatments. \nRegistration – $25 (Max= $75/family)
URL:https://patientworthy.com/event/msud-family-support-groups-19th-biennial-group-symposium/
LOCATION:Doubletree Green Tree\, 500 Mansfield Avenue\, Pittsburgh\, PA\, United States
CATEGORIES:Maple Syrup Urine Disease,Rare Disease
ORGANIZER;CN="MSUD%20Family%20Support%20Group":MAILTO:sandybulcher@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180702
DTSTAMP:20261114T162156
CREATED:20180407T142852Z
LAST-MODIFIED:20180407T142852Z
UID:87349-1530144000-1530489599@patientworthy.com
SUMMARY:PMD Family Support Group's Annual Conference
DESCRIPTION:The 2018 Annual Conference\nThis conference will feature a program that focuses on the latest research and information for Pelizaeus-Merzbacher disease. \nDiscounted $119/night rate for participants.
URL:https://patientworthy.com/event/pmd-family-support-groups-annual-conference/
LOCATION:Crowne Plaza Indianapolis\, 123 West Louisiana St\, Indianapolis\, IN\, United States
CATEGORIES:Pelizaeus-Merzbacher Disease,Rare Disease
ORGANIZER;CN="PMD%20Family%20Support":MAILTO:PMDFS.Indy@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180628
DTEND;VALUE=DATE:20180702
DTSTAMP:20261114T162156
CREATED:20180410T160331Z
LAST-MODIFIED:20180410T160331Z
UID:87549-1530144000-1530489599@patientworthy.com
SUMMARY:Kids Get Arthritis Too's 2018 JA Conference
DESCRIPTION:A patient and family conference for patients and families affected by juvenile arthritis. \nNurses\, caregivers\, or other health professionals are also encouraged to attend. \nLearn more information about facing juvenile idiopathic arthritis on a daily basis\, build community\, share your stories\, and learn the latest in treatment and disease research. \nRegistration\nEarly Bird (until 4/30)\nFamily rate (up to 4 people): $250\nAdditional family member: $25\nIndividuals: $150\nAfter 4/30\nFamily rate (up to 4 people): $350\nAdditional family member: $35\nIndividuals: $200
URL:https://patientworthy.com/event/kids-get-arthritis-toos-2018-ja-conference/
LOCATION:Hyatt Regency Bellevue\, 900 Bellevue Way NE\, Bellevue\, WA\, United States
CATEGORIES:Juvenile Idiopathic Arthritis,Rare Disease
END:VEVENT
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