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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
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TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20190310T070000
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TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20191103T060000
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TZID:America/Chicago
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DTSTART:20190310T080000
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DTSTART:20191103T070000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20190620
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190523T195222Z
LAST-MODIFIED:20190523T195222Z
UID:141486-1560988800-1561334399@patientworthy.com
SUMMARY:The Alagille Syndrome Alliance's International Symposium
DESCRIPTION:The International Symposium 2019\n“Connecting The Pieces” \nCincinnati\, Ohio\nThis will be the 8th International Symposium hosted by the Alagille Syndrome Alliance. This meeting is the largest gathering in the world of Alagille syndrome patients\, their families\, researchers\, and medical professionals. Don’t miss this opportunity for building community with other Alagille syndrome patients and learning about the latest research. \nFor registration information\, click here.
URL:https://patientworthy.com/event/alagille-syndrome-alliances-international-symposium/
LOCATION:Kingsgate Hotel and Conference Center\, 151 Goodman Drive\, Cincinnati\, OH\, 45219\, United States
CATEGORIES:Alagille Syndrome
ORGANIZER;CN="The%20Alagille%20Syndrome%20Alliance":MAILTO:alagille@alagille.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190620
DTEND;VALUE=DATE:20190623
DTSTAMP:20260815T180312
CREATED:20190523T203514Z
LAST-MODIFIED:20190523T203514Z
UID:141503-1560988800-1561247999@patientworthy.com
SUMMARY:The Immune Deficiency Foundation's National Conference
DESCRIPTION:The 2019 IDF National Conference\nNational Harbor\, Maryland \nAre you a patient with primary immunodeficiency or common variable immune deficiency? Well don’t miss this important patient event. At this conference\, immunodeficiency patients and their families will have the opportunity to learn the latest about clinical care and treatment options for various forms of immune deficiency as well as hear about the latest research initiatives. \nFor registration information\, click here.
URL:https://patientworthy.com/event/the-immune-deficiency-foundations-national-conference/
LOCATION:Gaylord National Resort and Convention Center\, 201 Waterfront Street\, National Harbor\, MD\, 20745\, United States
CATEGORIES:Common Variable Immune Deficiency,Primary Immunodeficiencies
ORGANIZER;CN="Immune%20Deficiency%20Foundation":MAILTO:conference@primaryimmune.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190620
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190524T150700Z
LAST-MODIFIED:20190524T150700Z
UID:141555-1560988800-1561334399@patientworthy.com
SUMMARY:The APS Type 1 Foundation's International APS Type 1 Symposium
DESCRIPTION:The 3rd International APS Type 1 Symposium\nNational Harbor\, Maryland \nin partnership with the Immune Deficiency Foundation’s IDF National Conference. \nAre you a autoimmune polyendocrine syndrome (APS) type 1 patient? Well don’t miss this important patient event. At this conference\, APS type 1 patients and their families will have the opportunity to learn the latest about clinical care and treatment options for APS type 1 as well as hear about the latest research initiatives. \nFor registration information\, click here.
URL:https://patientworthy.com/event/the-aps-type-1-foundations-international-aps-type-1-symposium/
LOCATION:Gaylord National Resort and Convention Center\, 201 Waterfront Street\, National Harbor\, MD\, 20745\, United States
CATEGORIES:APS Type 1,Rare Disease
ORGANIZER;CN="APS%20Type%201%20Foundation":MAILTO:Todd.talarico@apstype1.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190620
DTEND;VALUE=DATE:20190623
DTSTAMP:20260815T180312
CREATED:20190524T152555Z
LAST-MODIFIED:20190524T152555Z
UID:141563-1560988800-1561247999@patientworthy.com
SUMMARY:The Tuberous Sclerosis Alliance's International Tuberous Sclerosis Complex Research Conference
DESCRIPTION:The 2019 International Tuberous Sclerosis Complex Research Conference\n“Changing the Course of TSC” \nToronto\, Ontario\nAre you a tuberous sclerosis patient or medical expert? Well don’t miss this important research event. At this conference\, tuberous sclerosis experts from around the world will present information about the latest research initiatives. \nFor registration information\, click here.
URL:https://patientworthy.com/event/tuberous-sclerosis-international-tuberous-complex-conference/
LOCATION:Chelsea Hotel Toronto\, 33 Gerrard St W\, Toronto\, Ontario\, M5G 1Z4\, Canada
CATEGORIES:Tuberous Sclerosis
ORGANIZER;CN="Tuberous%20Sclerosis%20Alliance":MAILTO:info@tsalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190621
DTEND;VALUE=DATE:20190623
DTSTAMP:20260815T180312
CREATED:20180410T152746Z
LAST-MODIFIED:20190524T154732Z
UID:87540-1561075200-1561247999@patientworthy.com
SUMMARY:The Spastic Paraplegia Foundation's 2019 Spastic Paraplegia Annual Conference
DESCRIPTION:The 2019 Spastic Paraplegia Annual Conference\nPatients\, their families\, medical professionals\, and caregivers are invited to attend this conference. \nParticipants will have the opportunity to network with one another\, build community\, and learn the latest research and treatment news for hereditary spastic paraparesis and primary lateral sclerosis. \nFor registration information\, click here.
URL:https://patientworthy.com/event/spastic-paraplegia-foundations-spastic-paraplegia-annual-conference/
LOCATION:Hilton San Antonio Airport\, 611 NW Loop 410\, San Antonio\, TX\, 78216\, United States
CATEGORIES:Hereditary Spastic Paraparesis,Rare Disease
ORGANIZER;CN="Spastic%20Paraplegia%20Foundation":MAILTO:frank.davis77@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190621
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190429T193808Z
LAST-MODIFIED:20190429T193808Z
UID:138542-1561075200-1561334399@patientworthy.com
SUMMARY:The National Organization for Rare Disorders' Living Rare\, Living Stronger NORD Patient & Family Forum
DESCRIPTION:The 2019 Living Rare\, Living Stronger NORD Patient & Family Forum\nfeaturing the \nRare Impact Awards 2019 \nThis rare disease patient forum brings together health professionals\, physicians\, patients\, and medical researchers to learn from the latest scientific findings and form community together. \nThis event will also include the Rare Impact Awards\, an event that is meant to celebrate individuals that have made considerable contributions to the well-being and quality of life for rare disease patients and their caregivers. \nFor registration information\, click here.
URL:https://patientworthy.com/event/national-organization-rare-disorders-rare-awards/
LOCATION:Hilton Americas Houston\, 1600 Lamar Street\, Houston\, TX\, 77010\, United States
CATEGORIES:Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190621
DTEND;VALUE=DATE:20190625
DTSTAMP:20260815T180312
CREATED:20190508T211501Z
LAST-MODIFIED:20190508T211501Z
UID:139660-1561075200-1561420799@patientworthy.com
SUMMARY:The Oley Foundation's Oley Foundation and University of Illinois at Chicago Conference
DESCRIPTION:The 2019 Oley Foundation and University of Illinois at Chicago Annual Conference\nThe Essentials of Home Parenteral and Enteral Nutrition: What Consumers and Clinicians Need to Know \nAre you a rare disease patient that requires tube feeding or intravenous nutrition? Well this is a great event for you to attend. Learn the basics about conducting tube feeding or intravenous nutrition in the home setting. Are you a clinician? Then you shouldn’t miss this event either. Learn from colleagues and experts about tube feeding and intravenous nutrition and become a better resource for your patients. \nRegistration for consumers (people who use tube feeding or intravenous nutrition)\, family members\, and children is FREE. To register\, click here.
URL:https://patientworthy.com/event/oley-foundations-university-of-illinois-chicago-conference/
LOCATION:Lincolnshire Marriott Resort\, Ten Marriott Drive\, Lincolnshire\, IL\, 60069\, United States
CATEGORIES:Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190621
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190524T155938Z
LAST-MODIFIED:20190524T155938Z
UID:141573-1561075200-1561334399@patientworthy.com
SUMMARY:The Alpha-1 Foundation's Alpha-1 National Conference
DESCRIPTION:The 28th Annual Alpha-1 National Conference\nOrlando\, Florida \nAre you an alpha-1 antitrypsin deficiency patient? Well don’t miss this important patient event. At this conference\, alpha-1 antitrypsin deficiency patients and their families will have the opportunity to learn the latest about clinical care and treatment options for alpha-1 antitrypsin deficiency as well as hear about the latest research initiatives. \nFor registration information\, click here.
URL:https://patientworthy.com/event/the-alpha-1-foundations-alpha-1-national-conference/
LOCATION:Omni Orland Resort at ChampionsGate\, 1500 Masters Boulevard\, ChampionsGate\, FL\, 33896\, 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:20190621
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190524T202933Z
LAST-MODIFIED:20190524T202933Z
UID:141618-1561075200-1561334399@patientworthy.com
SUMMARY:PSC Partners Seeking a Cure's 2019 Annual Conference
DESCRIPTION:The 15th Annual Conference 2019\nRochester\, Minnesota \nAre you a primary sclerosing cholangitis patient? Well don’t miss this important patient event. At this conference\, primary sclerosing cholangitis patients and their families will have the opportunity to learn the latest about clinical care and treatment options for primary sclerosing cholangitis as well as hear about the latest research initiatives. \nFor registration information\, click here.
URL:https://patientworthy.com/event/psc-partners-seeking-cures-2019-annual-conference/
LOCATION:Mayo Civic Center\, 30 Civic Center Dr SE\, Rochester\, MN\, 55904\, United States
CATEGORIES:Primary Sclerosing Cholangitis
ORGANIZER;CN="PSC%20Partners%20Seeking%20a%20Cure":MAILTO:contactus@pscpartners.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190621
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190524T204258Z
LAST-MODIFIED:20190524T204258Z
UID:141623-1561075200-1561334399@patientworthy.com
SUMMARY:Cure JM Foundation's Annual National Family Conference
DESCRIPTION:The 13th Annual National Family Conference\nfeaturing the Walk Strong to Cure JM \nChicago\, Illinois\nAre you a juvenile dermatomyositis patient? Well don’t miss this important patient event. At this conference\, juvenile dermatomyositis patients and their families will have the opportunity to learn the latest about clinical care and treatment options for juvenile dermatomyositis as well as hear about the latest research initiatives. \nTo register\, click here.
URL:https://patientworthy.com/event/cure-jm-foundations-annual-national-family-conference/
LOCATION:The Hyatt Lodge at McDonald’s Campus\, 2815 Jorie Blvd\, Oak Brook\, IL\, 60523\, United States
CATEGORIES:Juvenile Dermatomyositis
ORGANIZER;CN="Cure%20JM%20Foundation":MAILTO:info@curejm.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190622
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20180403T201315Z
LAST-MODIFIED:20190531T214045Z
UID:86984-1561161600-1561334399@patientworthy.com
SUMMARY:PURA Syndrome Foundation's Annual PURA Syndrome Conference
DESCRIPTION:4th Annual PURA Syndrome Conference\nThe conference will be an opportunity for patient families and medical experts to meet and learn about the latest in PURA syndrome research. \nAdditionally\, families will be able to consult with health professionals\, build communities\, and exchange ideas. \nFor registration information\, click here.
URL:https://patientworthy.com/event/pura-syndrome-foundations-annual-pura-syndrome-conference/
LOCATION:Boston Marriott Quincy\, 1000 Marriott Drive\, Quincy\, MA\, 02169\, United States
CATEGORIES:PURA Syndrome,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190622
DTEND;VALUE=DATE:20190623
DTSTAMP:20260815T180312
CREATED:20190409T211917Z
LAST-MODIFIED:20190409T213157Z
UID:136308-1561161600-1561247999@patientworthy.com
SUMMARY:The National Organization for Rare Disorders 2019 Patient & Family Forum
DESCRIPTION:The 2019 Living Rare\, Living Stronger NORD Patient & Family Forum\nFeaturing\nThe 2019 Rare Impact Awards\nAs published on NORD’s website\, the 2019 Living Rare\, Living Stronger NORD Patient & Family Forum will be held on June 21-23 of this year! It will bring the rare community together with physicians\, medical students\, and allied health professionals for a program of learning\, sharing and connection – in an atmosphere of support and understanding – plus fun! \nThe Rare Impact Awards will be held on Saturday\, June 22nd\, 2019\, is an event that will celebrate and recognize people who have made critical contributions that have improved the lives of rare disease patients\, their families\, and caregivers.
URL:https://patientworthy.com/event/national-organization-rare-disorders-2019-patients-family-forum/
LOCATION:Space Center Houston\, 1601 E NASA Parkway\, Houston\, TX\, 77058\, United States
CATEGORIES:Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190622
DTEND;VALUE=DATE:20190624
DTSTAMP:20260815T180312
CREATED:20190524T210340Z
LAST-MODIFIED:20190524T210340Z
UID:141630-1561161600-1561334399@patientworthy.com
SUMMARY:The Cutaneous Lymphoma Foundation's Patient Conference
DESCRIPTION:The 2019 2-Day Patient Conference\nManhattan Beach\, California \nAre you a cutaneous T-cell lymphoma patient? Well don’t miss this important patient event. At this conference\, cutaneous T-cell lymphoma patients and their families will have the opportunity to learn the latest about clinical care and treatment options for cutaneous T-cell lymphoma as well as hear about the latest research initiatives. \nTo register\, click here.
URL:https://patientworthy.com/event/the-cutaneous-lymphoma-foundations-patient-conference-2/
LOCATION:Westdrift Manhattan Beach\, 1400 Parkview Ave\, Manhattan Beach\, CA\, 90266\, United States
CATEGORIES:Cutaneous T-Cell Lymphoma
ORGANIZER;CN="Cutaneous%20Lymphoma%20Foundation":MAILTO:info@clfoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20190622T100000
DTEND;TZID=America/Chicago:20190622T160000
DTSTAMP:20260815T180312
CREATED:20190116T223508Z
LAST-MODIFIED:20190116T232838Z
UID:117278-1561197600-1561219200@patientworthy.com
SUMMARY:The Foundation for Sarcoidosis Research's Oklahoma City Patient Education Conference
DESCRIPTION:The Oklahoma City Patient Education Conference 2019\nAre you a sarcoidosis patient? Well don’t miss this important patient event. At this conference\, sarcoidosis patients and their families will have the opportunity to learn the latest about clinical care and treatment options for sarcoidosis as well as hear about the latest research initiatives supported by the FSR. \nRegistration for this event will open on February 4th\, 2019. Check this link for the latest updates for this event as they are posted.\nConference Registration: $10
URL:https://patientworthy.com/event/foundation-sarcoidosis-researchs-oklahoma-patient-conference/
LOCATION:OH
CATEGORIES:Sarcoidosis
ORGANIZER;CN="Foundation%20for%20Sarcoidosis%20Research":MAILTO:info@stopsarcoidosis.org
END:VEVENT
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