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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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TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20181104T060000
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TZID:America/Chicago
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TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20180311T080000
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TZNAME:CST
DTSTART:20181104T070000
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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:20180711
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180411T161355Z
LAST-MODIFIED:20180411T161355Z
UID:87679-1531267200-1531699199@patientworthy.com
SUMMARY:The National Fragile X Foundation's 16th International Conference
DESCRIPTION:The 16th NFXF International Fragile X Conference\nThis event will cover all fragile X disorders and is the largest fragile X event in the world. \nCaregivers\, families\, patients\, and medical professionals are all encouraged to attend. Families will be able to network\, support\, and share with one another as well as consult directly with fragile x syndrome experts. \nLearn the latest news in treatment\, research\, and management strategies. \nRegistration\nEarly bird (until 5/14)\n$525/$1025/$350/$330 (individual/families/students/self advocates & siblings)\nRegular (5/15-6/12)\n$600/$1175/$425/$405\nLate/onsite (6/13-7/15)\n$675/$1325/$500/$480\nSingle day (all periods): $225
URL:https://patientworthy.com/event/national-fragile-x-foundations-16th-international-conference/
LOCATION:Hyatt Regency Cincinnati\, 151 West 5th Street\, Cincinnati\, OH\, United States
CATEGORIES:Fragile X Syndrome,Rare Disease
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180712
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180215T155502Z
LAST-MODIFIED:20180215T155502Z
UID:78556-1531353600-1531699199@patientworthy.com
SUMMARY:The Marfan Foundation Hosts 2018 Annual Conference - Santa Clara\, California
DESCRIPTION:The conference will take place is Santa Clara\, California July 12th-15th. To register\, please sign-up for emails by visiting the website below.
URL:https://patientworthy.com/event/marfan-foundation-hosts-2018-annual-conference/
LOCATION:OH
CATEGORIES:Rare Disease
ORGANIZER;CN="The%20Marfan%20Foundation":MAILTO:staff@marfan.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180712
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180410T190404Z
LAST-MODIFIED:20180410T190404Z
UID:87582-1531353600-1531699199@patientworthy.com
SUMMARY:National Organization for Albinism and Hypopigmentation's NOAH Conference 2018
DESCRIPTION:#NOAHCon2018\nThe event will be an opportunity for members of the albinism community to come together\, share stories\, and build community. \nParticipants will be able to learn the latest about albinism research. \nRegistration\nEarly deadline: 4/16/18\n$110/$185/$300 (children 5 and under/ages 5 and up/professionals)\nRegular deadline: 5/14/18\n$135/$240/$375
URL:https://patientworthy.com/event/national-organization-albinism-hypopigmentations-noah-conference-2018/
LOCATION:The Westin Kansas City and Crown Center\, One East Pershing Road\, Kansas City\, MO\, United States
CATEGORIES:Albinism,Rare Disease
ORGANIZER;CN="National%20Organization%20for%20Albinism%20and%20Hypopigmentation":MAILTO:info@albinism.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180712
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180411T213629Z
LAST-MODIFIED:20180411T213628Z
UID:87774-1531353600-1531699199@patientworthy.com
SUMMARY:The MAGIC Foundation's 24th Annual Convention
DESCRIPTION:The 24th Annual Convention\nThis conference is available to patients and their families that are affected by septo-optic dysplasia and other disorders that impact a child’s growth and development. It will serve as an opportunity to meet other members of the septo-optic dysplasia patient community and learn more from experts about the latest information about these disorders. \nParticipants will also learn about best practices for managing these conditions. \nRegistration\nStandard registration: $195 (additional adults: $25)\nDaycare: $55/day per child\nMuseum field trip: $40/child\nEvening activities (per day): $18 (ages 12+)\, $12 (ages 3-11)\, kids who are 2 and under are free\nAfter June 15th\, a $25 late fee will be added
URL:https://patientworthy.com/event/the-magic-foundations-24th-annual-convention/
LOCATION:The Westin Lombard\, 70 Yorktown Center\, Lombard\, IL\, United States
CATEGORIES:Rare Disease,Septo-Optic Dysplasia
ORGANIZER;CN="The%20MAGIC%20Foundation":MAILTO:contactus@magicfoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180712
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180411T215605Z
LAST-MODIFIED:20180411T215605Z
UID:87780-1531353600-1531699199@patientworthy.com
SUMMARY:The Marfan Foundation's Annual Conference
DESCRIPTION:  \nThis conference is available to children and adults affected by Marfan syndrome and their families. It will serve as an opportunity to meet other members of the Marfan syndrome patient community and learn more from experts about the latest information about this syndrome. \nParticipants will also learn about best practices for managing the condition and will have the opportunity to connect with other families and share their stories. \nRegistration\nEarly registration (Before 6/1): $375\nLate registration (After 6/1): $425\nSingle day registration: $200/$150 (Saturday/Sunday)\n 
URL:https://patientworthy.com/event/the-marfan-foundations-annual-conference/
LOCATION:Santa Clara Marriott\, 2700 Mission College Blvd\, Santa Clara\, CA\, United States
CATEGORIES:Marfan Syndrome,Rare Disease
ORGANIZER;CN="The%20Marfan%20Foundation":MAILTO:staff@marfan.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20180712T130000
DTEND;TZID=America/Chicago:20180715T120000
DTSTAMP:20261112T143927
CREATED:20180417T202320Z
LAST-MODIFIED:20180417T202320Z
UID:88282-1531400400-1531656000@patientworthy.com
SUMMARY:The Aicardi Syndrome Foundation's 2018 Family Conference
DESCRIPTION:The 2018 Aicardi Syndrome Family Conference \nAt this event\, attendees will be able to meet other families that have been affected by Aicardi syndrome. \nIn addition\, the conference will be an opportunity to learn the latest in Aicardi syndrome research and treatment. \nRegistration for this conference is completely free\, but attendees must be prepared to cover travel and lodging expenses.
URL:https://patientworthy.com/event/the-aicardi-syndrome-foundations-2018-family-conference/
LOCATION:Doubletree Bloomington\, 7800 Normandale Blvd\, Bloomington\, MN\, United States
CATEGORIES:Aicardi Syndrome,Rare Disease
ORGANIZER;CN="Aicardi%20Syndrome%20Foundation":MAILTO:research@aicardisyndromefoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180713
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180411T210245Z
LAST-MODIFIED:20180411T210245Z
UID:87759-1531440000-1531699199@patientworthy.com
SUMMARY:Osteogenesis Imperfecta Foundation's National Conference
DESCRIPTION:2018 OIF National Conference\nThis conference is available to children and adults affected by osteogenesis imperfecta and their families. It will serve as an opportunity to meet other members of the OI patient community and learn more from experts about the latest information about the condition. \nParticipants will also learn about best practices for managing osteogenesis imperfecta. \nRegistration\nChildren (childcare included): $210/$235/$260 (early bird/regular/on-site)\nChildren: $160/$185/$210\nTeens and adults: $195/$220/$245\nEarly bird: until 4/30\nRegular: until 6/30\non-site rates are charged after 6/30 until the event.\n\n 
URL:https://patientworthy.com/event/osteogenesis-imperfecta-foundations-national-conference/
LOCATION:Renaissance Baltimore Harborplace Hotel\, 202 East Pratt Street\, Baltimore\, United States
CATEGORIES:Osteogenesis Imperfecta,Rare Disease
ORGANIZER;CN="Osteogenesis%20Imperfecta%20Foundation":MAILTO:bonelink@oif.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180713
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180411T221518Z
LAST-MODIFIED:20180411T221518Z
UID:87784-1531440000-1531699199@patientworthy.com
SUMMARY:The Platelet Disorder Support Association's ITP Conference 2018
DESCRIPTION:Annual ITP Conference\nThis event will be an opportunity for ITP patients and their families to learn the latest info on ITP research and treatment from medical experts. \nIn addition\, families will be able to network\, build community\, and support one another. \nRegistration\nMembers: $125/$50/$100 (adult/child/single day)\nNonmembers: $150/$60/$120\n 
URL:https://patientworthy.com/event/platelet-disorder-support-associations-itp-conference-2018/
LOCATION:Hilton Cleveland Downtown\, 100 LAKESIDE AVENUE EAST\, Cleveland\, OH\, United States
CATEGORIES:Idiopathic thrombocytopenic purpura,Rare Disease
ORGANIZER;CN="Platelet%20Disorder%20Support%20Association":MAILTO:pdsa@pdsa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180713
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180412T142450Z
LAST-MODIFIED:20180412T151908Z
UID:87808-1531440000-1531699199@patientworthy.com
SUMMARY:The National Neutropenia Network's Neutropenia Family Conference
DESCRIPTION:2018 Neutropenia Family Conference \nThe Neutropenia Family Conference will be a convergence of health providers\, researchers\, and industry leadership to present the latest research and treatments in the field of neutropenia to the patient community. \nThe event will also be an opportunity for neutropenia patients and their relatives to network and share their experiences with one another. \nRegistration (ends 7/10)\n$250/$175/$125 (adults/youth/children)\nyouth: 12-17 yrs\nchild: 4-11 yrs
URL:https://patientworthy.com/event/the-national-neutropenia-networks-neutropenia-family-conference/
LOCATION:Marriott Hotel Ypsilanti\, 1275 S Huron Street\, Ypsilanti\, MI\, United States
CATEGORIES:Neutropenia,Rare Disease
ORGANIZER;CN="National%20Neutropenia%20Network":MAILTO:kate@neutropenianet.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180713
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180426T203538Z
LAST-MODIFIED:20180426T203538Z
UID:89199-1531440000-1531699199@patientworthy.com
SUMMARY:Stickler Involved People's SIP National Conference
DESCRIPTION:The 2018 SIP National Conference\nThis meeting is for anyone who is part of the Stickler syndrome community\, such as syndrome experts\, researchers\, caregivers\, patients\, and their families. \nRegistration\n$25/$60/$100 (Childcare/families/after 6/20)\n 
URL:https://patientworthy.com/event/stickler-involved-peoples-sip-national-conference/
LOCATION:Holiday Inn Portland Airport\, 8439 NE Columbia Blvd\, Portland\, OR\, United States
CATEGORIES:Rare Disease,Stickler Syndrome
ORGANIZER;CN="Stickler%20Involved%20People":MAILTO:sip@sticklers.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180713
DTEND;VALUE=DATE:20180716
DTSTAMP:20261112T143927
CREATED:20180608T183938Z
LAST-MODIFIED:20180608T183938Z
UID:93223-1531440000-1531699199@patientworthy.com
SUMMARY:The Myotubular Trust's Family Conference 2018
DESCRIPTION:Family Conference 2018\n“Together Even Stronger”\nThis conference will be open to patients affected by myotubular and centronuclear myopathies\, their families\, and caregivers. \nThe event will feature workshops and speakers that will help inform participants abouts the latest in research and treatment. \nThe conference is FREE for patients\, their families\, and caregivers. Other guests will be expected to pay £100 per day. \nAll participants are responsible for covering accommodations.
URL:https://patientworthy.com/event/the-myotubular-trusts-family-conference-2018/
LOCATION:Holiday Inn London-Bloomsbury\, Coram Street\, London\, WC1N 1HT\, United Kingdom
CATEGORIES:Centronuclear Myopathy,Myotubular Myopathy,Rare Disease
ORGANIZER;CN="ZNM%20%E2%80%93%20Zusammen%20Stark":MAILTO:holfischer@posteo.de
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20180714T080000
DTEND;TZID=America/Los_Angeles:20180716T180000
DTSTAMP:20261112T143927
CREATED:20180417T195349Z
LAST-MODIFIED:20180417T195349Z
UID:88264-1531555200-1531764000@patientworthy.com
SUMMARY:The International 22q11.2 Foundation's Biennial International 22q11.2 Conference
DESCRIPTION:The 11th Biennial International 22q11.2 Conference\nThis event is open to families affected by DiGeorge syndrome (22q11.2) and other deletion duplication syndromes. \nParticipants will learn the latest information about these conditions from leading experts in the research field. Families will also have the opportunity to network and share with one another\, as well as just having fun together. \nRegistration\nAdult: $250/$300/$350 (Early/regular/late)\nEarly registration: before 5/1\nLate registration: after 6/29\nDinner only: $150/$25 (Adult/child)\n 
URL:https://patientworthy.com/event/international-22q11-2-foundations-biennial-international-22q11-2-conference/
LOCATION:The Westin Whistler\, 4090 Whistler Way\, Whistler\, British Columbia\, Canada
CATEGORIES:22q11.2 Deletion Syndrome,Deletion Duplication Syndromes,DiGeorge Syndrome,Rare Disease
ORGANIZER;CN="International%2022q11.2%20Foundation":MAILTO:info@22q.org
END:VEVENT
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