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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:20180311T070000
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TZNAME:EST
DTSTART:20181104T060000
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TZID:America/Los_Angeles
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DTSTART:20180311T100000
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DTSTART:20181104T090000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20180704
DTEND;VALUE=DATE:20180708
DTSTAMP:20261113T191409
CREATED:20180416T160828Z
LAST-MODIFIED:20180416T160828Z
UID:88153-1530662400-1531007999@patientworthy.com
SUMMARY:AMCSI's Annual Arthrogryposis Multiplex Congenita Conference
DESCRIPTION:The 13th Annual Arthrogryposis Multiplex Congenita Conference\nThis conference will be a chance for families affected by AMC to converge and share stories and support. In addition medical professionals and experts will be present to share the latest in AMC research and treatment. AMC families will be able to meet with them to learn more and get firsthand feedback. \nRegistration\nPatients can attend the conference for FREE.\nEarly bird (before 4/30)\nMembers: $60/$40/$10 (Adults/children/under 1 year)\nNonmembers: $75/$50/$10
URL:https://patientworthy.com/event/amcsis-annual-arthrogryposis-multiplex-congenita-conference/
LOCATION:Hilton Columbus at Easton\, 3900 Chagrin Dr .\, Columbus\, OH\, 43219\, United States
CATEGORIES:Arthrogryposis Multiplex Congenita,Rare Disease
ORGANIZER;CN="Arthrogryposis%20Multiplex%20Congenita%20Support%2C%20Inc.":MAILTO:bod@amcsupport.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180705
DTEND;VALUE=DATE:20180709
DTSTAMP:20261113T191409
CREATED:20180416T163404Z
LAST-MODIFIED:20180416T163404Z
UID:88158-1530748800-1531094399@patientworthy.com
SUMMARY:The National PKU Alliance's 2018 NPKUA Conference
DESCRIPTION:“Advance the Dream”\nThis conference will be a chance for PKU patients and their families to learn the latest about PKU research and treatment from disease experts. \nThe event will also be a great opportunity for PKU families to share stories\, build community\, and network with each other. \nRegistration\nMembers: $299/$149/$99 (Families/individuals or extra family members/adult patients)\nNonmembers: $399/$249/$199\nIndustry reps: $429
URL:https://patientworthy.com/event/the-national-pku-alliances-2018-npkua-conference/
LOCATION:Hilton Atlanta\, 255 COURTLAND STREET NE\, Atlanta\, GA\, United States
CATEGORIES:Phenylketonuria,Rare Disease
ORGANIZER;CN="National%20PKU%20Alliance":MAILTO:Brenda.Parker@npkua.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180706
DTEND;VALUE=DATE:20180714
DTSTAMP:20261113T191409
CREATED:20180416T202348Z
LAST-MODIFIED:20180416T202348Z
UID:88173-1530835200-1531526399@patientworthy.com
SUMMARY:Little People of America's National Conference
DESCRIPTION:LPA National Conference Orlando 2018\nThis event will be a great opportunity for those affected by dwarfism and diastrophic dysplasia to build community and have fun with one another. \nThis will also be an event that will provide an uplifting\, educational program that will allow participants to learn more. \nFor registration info\, call 714-368-3689.
URL:https://patientworthy.com/event/little-people-of-americas-national-conference/
LOCATION:Hyatt Regency Orlando\, 9801 International Dr\, Orlando\, FL 32819\, Orlando\, FL\, 32819\, United States
CATEGORIES:Diastrophic Dysplasia,Dwarfism,Rare Disease
ORGANIZER;CN="Little%20People%20of%20America":MAILTO:info@lpaonline.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180706
DTEND;VALUE=DATE:20180708
DTSTAMP:20261113T191409
CREATED:20180416T210351Z
LAST-MODIFIED:20180416T210351Z
UID:88178-1530835200-1531007999@patientworthy.com
SUMMARY:APFED's EOS Connection 2018
DESCRIPTION:The 16th Annual Patient Education Conference\nThis event is for patients and families that are affected by any eosinophilic disorders\, such as eosinophilic gastroenteritis\, Eisenmenger syndrome\, eosinophilic esophagitis\, and eosinophilic fasciitis. \nAttendees will learn the latest in research on these disorders\, have opportunities to meets with medical experts\, and share and network with one another. \nRegistration\nEarly bird (before June 15th)\n$125/$150 (members/nonmembers)\nAfter 6/15 (on-site): $160\nAll attendees age 11 and up must register.
URL:https://patientworthy.com/event/apfeds-eos-connection-2018/
LOCATION:Hyatt Regency Aurora-Denver Conference Center\, 13200 E 14th Place\, Aurora\, CO\, United States
CATEGORIES:Eisenmenger Syndrome,Eosinophilic Disorders,Rare Disease
ORGANIZER;CN="American%20Partnership%20for%20Eosinophilic%20Disorders":MAILTO:mail@apfed.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180706
DTEND;VALUE=DATE:20180708
DTSTAMP:20261113T191409
CREATED:20180416T213435Z
LAST-MODIFIED:20180416T215235Z
UID:88190-1530835200-1531007999@patientworthy.com
SUMMARY:FOD Support Group's International Metabolic Conference
DESCRIPTION:2018 FOD/OAA International Metabolic Conference\nFamilies dealing with fatty oxidation disorders\, methymalonic acidemia\, and organic acidemias will feel right at home at this event. \nAt this conference\, patient families will be able to support and network with one another as well as learn the latest information about the fatty oxidation disorders and organic acidemias. \nRegistration is FREE for families. (Health professionals: $50) \n 
URL:https://patientworthy.com/event/fod-support-groups-international-metabolic-conference/
LOCATION:Embassy Suites Minneapolis Airport\, 7901 34th Avenue South\, Bloomington\, MN\, United States
CATEGORIES:Fatty Oxidation Disorders,Methylmalonic Acidemia,Rare Disease
ORGANIZER;CN="FOD%20Support%20Group":MAILTO:deb@fodsupport.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180706
DTEND;VALUE=DATE:20180709
DTSTAMP:20261113T191409
CREATED:20180417T161543Z
LAST-MODIFIED:20180417T161543Z
UID:88246-1530835200-1531094399@patientworthy.com
SUMMARY:The Sotos Syndrome Support Association's 2018 Conference
DESCRIPTION:  \n“Learn\, Network\, and Bond!”\nThis event will be an opportunity for Sotos syndrome patients and families to come together for a weekend of support\, community building\, and education. \nAdditionally\, Sotos syndrome researchers will be in attendance to present the latest in research and treatment\, and medical professionals will be available for personal consultations with patients and their families. \nIn order to attend the conference\, a family member or individual must be a member of the SSSA. \nRegistration\nEarly bird (before 5/1): $135/person\nAfter 5/1: $160/person
URL:https://patientworthy.com/event/sotos-syndrome-support-associations-2018-conference/
LOCATION:Holiday Inn & Suites Pointe-Claire Montreal Airport\, 6700 Trans Canada\, Pointe Claire\, Quebec\, Canada
CATEGORIES:Rare Disease,Sotos Syndrome
ORGANIZER;CN="Sotos%20Syndrome%20Support%20Association":MAILTO:info@sotossyndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180706
DTEND;VALUE=DATE:20180709
DTSTAMP:20261113T191409
CREATED:20180417T190827Z
LAST-MODIFIED:20180417T190827Z
UID:88254-1530835200-1531094399@patientworthy.com
SUMMARY:The National Urea Cycle Disorders Foundation's Annual Family Conference
DESCRIPTION:The 2019 NUCDF Annual Family Conference\nThis year’s conference will be a unique opportunity for researchers\, patients\, families\, and medical experts to come together and spread support and knowledge about urea cycle disorders. \nParticipants will have a chance to learn the latest in research and treatment for urea cycle disorders and get informed about the latest in day to day management. \nRegistration\nThis conference is FREE for members of the NUCDF and their immediate families.\nNonmembers and extra family members: $65
URL:https://patientworthy.com/event/national-urea-cycle-disorders-foundations-annual-family-conference/
LOCATION:Hilton San Diego Resort & Spa\, 1775 EAST MISSION BAY DRIVE\, San Diego\, CA\, United States
CATEGORIES:Rare Disease,Urea Cycle Disorders
ORGANIZER;CN="National%20Urea%20Cycle%20Disorders%20Foundation":MAILTO:info@nucdf.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20180706T080000
DTEND;TZID=America/Los_Angeles:20180707T170000
DTSTAMP:20261113T191409
CREATED:20180416T221540Z
LAST-MODIFIED:20180416T221540Z
UID:88199-1530864000-1530982800@patientworthy.com
SUMMARY:The National Foundation for Ectodermal Dysplasias' 2018 Family Conference
DESCRIPTION:“Bridges to Inspiration”\nAt the 2018 conference\, families and patients affected by ectrodactyly-ectodermal dysplasia-cleft syndrome and other ectodermal dysplasias will be able to build community with each other\, network\, and share stories. \nIn addition\, medical experts will be available for one on one consultation in order to determine the best treatment profile for patients. \nRegistration\n$100/$150 (Child/adult)\nLate registration (5/26)\n$150/$200
URL:https://patientworthy.com/event/national-foundation-ectodermal-dysplasias-2018-family-conference/
LOCATION:Doubletree Portland\, 1000 NE Multnomah Street\, Portland\, OR\, United States
CATEGORIES:Ectrodactyly-Ectodermal Dysplasia-Cleft Syndrome,Rare Disease
ORGANIZER;CN="National%20Foundation%20for%20Ectodermal%20Dysplasias":MAILTO:info@nfed.org
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