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X-WR-CALNAME:Patient Worthy
X-ORIGINAL-URL:https://patientworthy.com
X-WR-CALDESC:Events for Patient Worthy
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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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TZID:America/Los_Angeles
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TZOFFSETTO:-0700
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DTSTART:20180311T100000
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DTSTART:20181104T090000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20180620
DTEND;VALUE=DATE:20180624
DTSTAMP:20261113T151744
CREATED:20180405T160943Z
LAST-MODIFIED:20180405T160943Z
UID:87108-1529452800-1529798399@patientworthy.com
SUMMARY:The CCHS Network's 5th International CCHS Conference
DESCRIPTION:“The Future is NOW—Priorities\, Partnerships\, and Patient Voice”\nThe conference will be an event for health professionals and CCHS patient community to come together in collaboration\, communication\, and support. \nAttendees will learn about the latest in CCHS research and treatments. \nRegistration\nMembers: FREE\nProfessionals/Non-members: $200\nWith dinner (one person/two people): $250/$300
URL:https://patientworthy.com/event/the-cchs-networks-5th-international-cchs-conference/
LOCATION:Chase Park Plaza\, 212 N. Kingshighway Blvd\, St. Louis\, MO\, United States
CATEGORIES:Congenital Central Hypoventilation Syndrome,Rare Disease
ORGANIZER;CN="CCHS%20Network":MAILTO:mycchsnetwork@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180621
DTEND;VALUE=DATE:20180624
DTSTAMP:20261113T151744
CREATED:20180405T182810Z
LAST-MODIFIED:20180405T182810Z
UID:87119-1529539200-1529798399@patientworthy.com
SUMMARY:The Pitt-Hopkins Research Foundation's Family Conference & Scientific Symposium
DESCRIPTION:2018 Family Conference & Scientific Symposium\nThis conference will be an opportunity for Pitts-Hopkins syndrome patients and medical researchers to come together\, collaborate\, and network. \nPatients and their families will have the opportunity to learn the latest in treatment and research. \nRegistration\nParents\, caregivers (single day): $40\nAdult lunch (per day): $10\nChild lunch\, 0-18 (per day): $5\nThursday symposium: $100\nThursday scientific symposium will be at Radisson Blu Mall of America 2100 Killebrew Drive\, Bloomington\, MN 55425.
URL:https://patientworthy.com/event/pitt-hopkins-research-foundations-family-conference-symposium/
LOCATION:Embassy Suites by Hilton\, 2800 American Boulevard West\, Minneapolis\, MN\, United States
CATEGORIES:Pitt-Hopkins Syndrome,Rare Disease
ORGANIZER;CN="Pitt-Hopkins%20Research%20Foundation":MAILTO:information@pitthopkins.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180621
DTEND;VALUE=DATE:20180625
DTSTAMP:20261113T151744
CREATED:20180405T193750Z
LAST-MODIFIED:20180405T193750Z
UID:87137-1529539200-1529884799@patientworthy.com
SUMMARY:Choroideremia Research Foundation's 2018 Conference
DESCRIPTION:2018 CRF Conference\nThe conference will be a chance for families impacted by choroideremia to share with one another and build community. \nConferences are held every two years and are opportunities to learn about the latest research and treatments for choroideremia. \nRegistration\nEarly registration (until 4/15): $100/$25/FREE (Adult/Teens/Children 12 and under)\nRegular registration: $125/$50/FREE (Adults/Teens/Children 12 and under)
URL:https://patientworthy.com/event/choroideremia-research-foundations-2018-conference/
LOCATION:Embassy Suites Dallas\, 4650 West Airport Freeway\, Irving\, TX\, United States
CATEGORIES:Choroideremia,Rare Disease
ORGANIZER;CN="Choroideremia%20Research%20Foundation":MAILTO:erichartman@curechm.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180622
DTEND;VALUE=DATE:20180625
DTSTAMP:20261113T151744
CREATED:20180405T201419Z
LAST-MODIFIED:20180405T201419Z
UID:87146-1529625600-1529884799@patientworthy.com
SUMMARY:Alternating Hemiplegia of Childhood Foundation's Family Meeting 2018
DESCRIPTION:Family Meeting 2018\nThis is an opportunity for families affected by alternating hemiplegia of childhood to come together and realize that they are not alone. \nFamilies will meet up to share stories\, struggles\, and advice. \nRegistration\nFamily of 5 or less: $130/$180 (before 5/15/after 5/15)\nCouple: $80/$130 (before 5/15/after 5/15)\nIndividuals: $50/$75 (before 5/15/after 5/15)\nCaregivers and extra family members: $25/$30 (before 5/15/after 5/15)\nSpeakers\, researchers\, clinical professionals: free
URL:https://patientworthy.com/event/alternating-hemiplegia-of-childhood-foundations-family-meeting-2018/
LOCATION:Renaissance Woodbridge Hotel\, 515 US Highway 1 South\, Iselin\, NJ\, United States
CATEGORIES:Alternating Hemiplegia of Childhood,Rare Disease
ORGANIZER;CN="Alternating%20Hemiplegia%20of%20Childhood%20Foundation":MAILTO:ahcfoundation@ahckids.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180622
DTEND;VALUE=DATE:20180625
DTSTAMP:20261113T151744
CREATED:20180405T214038Z
LAST-MODIFIED:20180405T214038Z
UID:87178-1529625600-1529884799@patientworthy.com
SUMMARY:Dysautonomia International's 6th Annual Conference
DESCRIPTION:“Together We Rock”\nThis conference will consist of educational seminars\, patient advocacy training\, and inspiring public speakers. \nThis conference will focus on autonomic disorders such as postural orthostatic tachycardia syndrome. Patients\, researchers\, caregivers\, industry reps\, and nonprofit leaders are invited to attend the event. \nRegistration\nBefore May 11th\, 2018: $275\nAfter May 11: $325
URL:https://patientworthy.com/event/dysautonomia-internationals-6th-annual-conference/
LOCATION:Sheraton Music City Hotel\, 777 ​McGavock ​Pike\, Nashville\, TN\, United States
CATEGORIES:Postural Orthostatic Tachycardia Syndrome,Rare Disease
ORGANIZER;CN="Dysautonomia%20International":MAILTO:info@DysautonomiaInternational.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180622
DTEND;VALUE=DATE:20180625
DTSTAMP:20261113T151744
CREATED:20180405T221745Z
LAST-MODIFIED:20180405T221745Z
UID:87187-1529625600-1529884799@patientworthy.com
SUMMARY:PSC Partners Seeking a Cure's 2018 Annual Conference
DESCRIPTION:14th Annual Conference\nThe conference will be an opportunity for caregivers and patients to share and collaborate with one another. Topics will include the latest in primary sclerosing cholangitis news\, research\, and treatments. \nNo one under age 13 is permitted to attend the conference. \nRegistration\nEarly bird (until 4/8): $200\nRegular (4/9-5/28): $220\nLate (5/29-6/9): $250\nMedical Providers and Corporate Professionals (through 6/9): $310
URL:https://patientworthy.com/event/psc-partners-seeking-a-cures-2018-annual-conference/
LOCATION:Sheraton Grand Sacramento\, 1230 J St\, Sacramento\, CA\, United States
CATEGORIES:Primary Sclerosing Cholangitis,Rare Disease
ORGANIZER;CN="PSC%20Partners%20Seeking%20a%20Cure":MAILTO:contactus@pscpartners.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180623
DTEND;VALUE=DATE:20180625
DTSTAMP:20261113T151744
CREATED:20180406T141417Z
LAST-MODIFIED:20180406T141417Z
UID:87217-1529712000-1529884799@patientworthy.com
SUMMARY:The Cutaneous Lymphoma Foundation's Patient Conference
DESCRIPTION:This two day conference will be an opportunity for the cutaneous T-cell lymphoma patient community to come together and build community and fellowship. \nIn addition\, attendees will have the opportunity to learn the latest in clinical research and treatments related to cutaneous T-cell lymphoma. \nRegistering for this event is free\, although hotel accommodations are not included. \n 
URL:https://patientworthy.com/event/the-cutaneous-lymphoma-foundations-patient-conference/
LOCATION:Bethesda North Marriott Hotel & Conference Center\, 5701 Marinelli Road\, Rockville\, MD\, United States
CATEGORIES:Cutaneous T-Cell Lymphoma,Rare Disease
ORGANIZER;CN="Cutaneous%20Lymphoma%20Foundation":MAILTO:info@clfoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180623
DTEND;VALUE=DATE:20180626
DTSTAMP:20261113T151744
CREATED:20180406T143851Z
LAST-MODIFIED:20180406T143851Z
UID:87224-1529712000-1529971199@patientworthy.com
SUMMARY:The United Leukodystrophy Foundation's Scientific Symposium and Family Conference
DESCRIPTION:The 2018 Scientific Symposium and Family Conference\nThis conference will consist of a scientific symposium program that will allow medical professionals and researchers to present the latest research in the field of leukodystrophy. \nThere will also be a separate family conference that will allow members of the leukodystrophy patient community to network\, share stories\, and collaborate. \nRegistration\nFamily Conference\nAdult members/non-members/teens: $100/$150/$50\nChildren (12 and under): FREE\nScientific Symposium: $300\n  \n 
URL:https://patientworthy.com/event/united-leukodystrophy-foundations-scientific-symposium-family-conference/
LOCATION:Sheraton Charlotte Hotel and Le Meridien Charlotte\, 555 South McDowell Street\, North Tower\, Charlotte\, NC\, United States
CATEGORIES:Leukodystrophy,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20180623T083000
DTEND;TZID=America/Los_Angeles:20180623T161000
DTSTAMP:20261113T151744
CREATED:20180403T195011Z
LAST-MODIFIED:20180403T195011Z
UID:86964-1529742600-1529770200@patientworthy.com
SUMMARY:Aplastic Anemia and MDS International Foundation's Living with Aplastic Anemia\, MDS\, and PNH Conference
DESCRIPTION:A patient and family conference for people with aplastic anemia\, myelodysplastic syndromes\, paroxysmal nocturnal hemoglobinuria\, and acute myeloid leukemia. \nNurses\, caregivers\, or other health professionals are also encouraged to attend. \nLearn more information about facing these diseases every day and meet powerful survivors that can understand the challenges. \n 
URL:https://patientworthy.com/event/aplastic-anemia-international-foundations-aplastic-anemia-mds-pnh/
LOCATION:Fred Hutchinson Cancer Research Center\, 1100 Fairview Avenue North\, Seattle\, WA\, United States
CATEGORIES:Acute Myeloid Leukemia,Aplastic Anemia,Myelodysplastic Syndromes,paroxysmal nocturnal hemoglobinuria,Rare Disease
ORGANIZER;CN="Aplastic%20Anemia%20and%20MDS%20International%20Foundation":MAILTO:conference@aamds.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20180623T083000
DTEND;TZID=America/Los_Angeles:20180623T161000
DTSTAMP:20261113T151744
CREATED:20180410T154529Z
LAST-MODIFIED:20180410T154529Z
UID:87547-1529742600-1529770200@patientworthy.com
SUMMARY:Aplastic Anemia and MDS International Foundation's Patient Conference
DESCRIPTION:The 7th Seattle Patient Conference: Aplastic Anemia\, MDS\, and PNH\nA patient and family conference for people with aplastic anemia\, myelodysplastic syndromes\, paroxysmal nocturnal hemoglobinuria\, and acute myeloid leukemia. \nNurses\, caregivers\, or other health professionals are also encouraged to attend. \nLearn more information about facing these diseases every day and meet powerful survivors that can understand the challenges. \nRegistration for this conference is free.
URL:https://patientworthy.com/event/aplastic-anemia-mds-international-foundations-patient-conference/
LOCATION:Fred Hutchinson Cancer Research Center\, 1100 Fairview Avenue North\, Seattle\, WA\, United States
CATEGORIES:Aplastic Anemia,paroxysmal nocturnal hemoglobinuria,Rare Disease
ORGANIZER;CN="Aplastic%20Anemia%20and%20MDS%20International%20Foundation":MAILTO:conference@aamds.org
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