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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:20180627
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
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:20261113T151714
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:20180702
DTSTAMP:20261113T151714
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:20261113T151714
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
CREATED:20180407T161520Z
LAST-MODIFIED:20180407T161520Z
UID:87367-1530230400-1530489599@patientworthy.com
SUMMARY:The Alpha-1 Foundation's Annual National Education Conference
DESCRIPTION:27th Annual Alpha-1 National Education Conference\nThis event will allow Alpha-1 and COPD patient families to learn more about their diseases and stay informed about the latest in research and disease information. \nRegistration\nStandard/Guest/Teen/Child/Per day: $150/$135/$135/$110/$135
URL:https://patientworthy.com/event/alpha-1-foundations-annual-national-education-conference/
LOCATION:Hyatt Regency San Francisco\, 5 Embarcadero Center\, San Francisco\, CA\, 94111\, United States
CATEGORIES:Alpha-1 antitrypsin deficiency,Rare Disease
ORGANIZER;CN="Alpha-1%20Foundation":MAILTO:info@alpha-1foundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
CREATED:20180407T163705Z
LAST-MODIFIED:20180407T163705Z
UID:87372-1530230400-1530489599@patientworthy.com
SUMMARY:The Cyclic Vomiting Syndrome Association's International Adult and Family Conference
DESCRIPTION:The 13th International Adult and Family Conference\nThis conference will be an opportunity for the cyclic vomiting syndrome patient community to learn about a variety of subjects related to this condition. \nRegistration\nMembers: $175/$225/$275 (Single/Couple/Family)\nNon-members: $250/$300/$350 (Single/Couple/Family)
URL:https://patientworthy.com/event/cyclic-vomiting-syndrome-associations-international-family-conference/
LOCATION:Sheraton Milwaukee Brookfield Hotel\, 375 South Moorland Road\, Brookfield\, WI\, United States
CATEGORIES:Cyclic Vomiting Syndrome,Rare Disease
ORGANIZER;CN="Cyclic%20Vomiting%20Syndrome%20Association":MAILTO:cvsa@cvsaonline.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
CREATED:20180408T152434Z
LAST-MODIFIED:20180408T152434Z
UID:87384-1530230400-1530489599@patientworthy.com
SUMMARY:Foundation for Ichthyosis and Related Skin Types' National Conference 2018
DESCRIPTION:20th Biennial FIRST National Conference\n“Tune in Together”\nJoin the Foundation for Ichthyosis and Related Skin Types (FIRST) at their biennial national conference. \nPeople with ichthyosis bullosa of siemens\, their families\, and disease experts will come together to network\, build community\, and learn the latest in research and treatment. \nRegistration\n$300/$120/$35 (Adult/child/toddler)\n 
URL:https://patientworthy.com/event/foundation-for-icthyosis-and-related-skin-types-national-conference-2018/
LOCATION:Nashville Airport Marriott\, 600 Mariott Drive\, Nashville\, TN\, 37214\, United States
CATEGORIES:Ichthyosis Bullosa of Siemens,Rare Disease
ORGANIZER;CN="Foundation%20for%20Ichthyosis%20and%20Related%20Skin%20Types":MAILTO:info@firstskinfoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
CREATED:20180408T154614Z
LAST-MODIFIED:20180408T154614Z
UID:87388-1530230400-1530489599@patientworthy.com
SUMMARY:The Pulmonary Hypertension Association's 2018 International PH Conference and Scientific Sessions
DESCRIPTION:“PHinding Your Hope”\nThis is the largest gathering of the PH disease community in the world. \nThis will be an opportunity for empowerment for patients with PH. Participants will learn about the best strategies to cope with this illness on a daily basis\, as well as have the opportunity to consult with PH experts and learn the latest in disease research. \nEarly Bird Registration (ends 4/30)\n$150/$125 (Patient members/child patients)\nRegular Registration (after 4/30)\n$175/$150 (Patient members/child patients)\n 
URL:https://patientworthy.com/event/pulmonary-hypertension-associations-international-ph-conference-and-sessions/
LOCATION:Renaissance Orlando at SeaWorld\, 6677 Sea Harbor Drive\, Orlando\, FL\, United States
CATEGORIES:Pulmonary Hypertension,Rare Disease
ORGANIZER;CN="Pulmonary%20Hypertension%20Association":MAILTO:PHA@PHAssociation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261113T151714
CREATED:20180409T144611Z
LAST-MODIFIED:20180409T144611Z
UID:87434-1530230400-1530489599@patientworthy.com
SUMMARY:The Cure JM Foundation's National Conference and Fundraiser
DESCRIPTION:The 2018 National Conference and Fundraiser\nThis conference will be a change for patients and their families to meet one another to build community and support. In addition\, disease experts will present the latest in juvenile dermatomyositis research. \n 
URL:https://patientworthy.com/event/cure-jm-foundations-national-conference-and-fundraiser/
LOCATION:Key Bridge Marriott\, 1401 Lee Hwy\, Arlington\, VA\, United States
CATEGORIES:Juvenile Dermatomyositis,Rare Disease
ORGANIZER;CN="Cure%20JM%20Foundation":MAILTO:info@curejm.org
END:VEVENT
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