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:20180627
DTEND;VALUE=DATE:20180701
DTSTAMP:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20261112T144832
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:20180701
DTSTAMP:20261112T144832
CREATED:20180407T145335Z
LAST-MODIFIED:20180407T145335Z
UID:87355-1530230400-1530403199@patientworthy.com
SUMMARY:The International Foundation For CDKL5 Research's International CDKL5 Family Education and Awareness Conference
DESCRIPTION:The 4th International Family Conference\n“UNITY FOR A CURE”\nThis conference will be an opportunity for medical professionals\, caregivers\, and patient families to come together collaboratively to learn about the latest research and treatment for CDKL5. \nRegistration for this conference is FREE
URL:https://patientworthy.com/event/international-foundation-cdkl5-cdkl5-family-education-awareness-conference/
LOCATION:Hyatt Regency Aurora-Denver Conference Center\, 13200 E 14th Place\, Aurora\, CO\, United States
CATEGORIES:CDKL5,Rare Disease
ORGANIZER;CN="International%20Foundation%20for%20CDLK5%20Research":MAILTO:ajaksha@CDKL5.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180629
DTEND;VALUE=DATE:20180702
DTSTAMP:20261112T144832
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:20261112T144832
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:20261112T144833
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:20261112T144833
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:20261112T144833
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
END:VCALENDAR