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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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DTSTART:20200308T070000
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DTSTART:20201101T060000
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DTSTART;VALUE=DATE:20201029
DTEND;VALUE=DATE:20201101
DTSTAMP:20260630T111551
CREATED:20180426T160735Z
LAST-MODIFIED:20200527T195019Z
UID:89152-1603929600-1604188799@patientworthy.com
SUMMARY:The VHL Alliance's 14th International Medical/Research Symposium
DESCRIPTION:The 14th International VHL Medical/Research Symposium\nOctober 29-31\, 2020 \nAmsterdam\, Netherlands \nThis event is geared towards the medical and research community. The conference will feature scientific research presentations on findings related to Von Hippel-Lindau syndrome. \nPatients and families are also welcome to attend to learn the latest in syndrome research. \nTo register\, click here.
URL:https://patientworthy.com/event/vhls-14th-international-medical-research-symposium/
LOCATION:Vondelkerk\, Vondelstraat 120\, Amsterdam\, 1054 GS\, Netherlands
CATEGORIES:Rare Disease,Von Hippel-Lindau syndrome
ORGANIZER;CN="The%20VHL%20Alliance":MAILTO:info@vhl.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201029T123000
DTEND;TZID=America/New_York:20201029T163000
DTSTAMP:20260630T111551
CREATED:20200929T203205Z
LAST-MODIFIED:20200929T203205Z
UID:322234-1603974600-1603989000@patientworthy.com
SUMMARY:KrabbeConnect's Patient-Focused Drug Development Meeting
DESCRIPTION:Patient-Focused Drug Development Meeting with the FDA\nOrganized by the National Organization for Rare Disorders (NORD)\, this meeting will be a critical opportunity for patients to communicate directly with regulators at the US Food and Drug Administration (FDA). \nThis is an opportunity for the Krabbe disease community to articulate their experiences and help the FDA understand what improvements in treatment would truly look like. This event will involve collaboration from a number of patient advocacy groups\, and all Krabbe disease caregivers and patients are encouraged to attend. \nAre you interested in attending this event? Click here to get signed up.
URL:https://patientworthy.com/event/krabbeconnects-patient-focused-drug-development-meeting/
CATEGORIES:Krabbe Disease
ORGANIZER;CN="KrabbeConnect":MAILTO:info@krabbeconnect.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201029T180000
DTEND;TZID=America/New_York:20201029T193000
DTSTAMP:20260630T111551
CREATED:20201019T132632Z
LAST-MODIFIED:20201019T132632Z
UID:367576-1603994400-1603999800@patientworthy.com
SUMMARY:Managing Your PNH Live Webinar- Sponsored by Alexion Pharmaceuticals Inc.
DESCRIPTION:Managing Your PNH\nConnect. Learn. Take Action. \nLive Webinar\nThursday\, October 29\, 2020\nAlexion invites patients\, families\, and caregivers living with paroxysmal nocturnal hemoglobinuria (PNH) to an educational program for the PNH community. Please join us as we bring together patients and families living with PNH. Patient and Caregiver Ambassadors will share their personal stories and Jamie Koprivnikar\, MD\, John Theurer Cancer Center at Hackensack University Medical Center\, will share the latest thinking and knowledge about the disease and its management options. \nTo register for this event\, click here or call 1-844-376-7172. \nAcknowledgment: This event post is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant\, vetted and valuable information to the rare disease community. US/UNB-P/0104
URL:https://patientworthy.com/event/alexions-managing-pnh-live-webinar-2/
CATEGORIES:paroxysmal nocturnal hemoglobinuria
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201029T190000
DTEND;TZID=America/New_York:20201029T200000
DTSTAMP:20260630T111551
CREATED:20200921T160747Z
LAST-MODIFIED:20200921T190452Z
UID:302670-1603998000-1604001600@patientworthy.com
SUMMARY:Bristol Myers Squibb's The MS Mindshift Event Series
DESCRIPTION:The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. \n\nA presentation from Karen Blitz-Shabbir\, DO\, NYP Brooklyn Methodist on the impact that healthy lifestyle choices can have on MS\nPersonal journey shared by patient ambassador Nina\nWellness topic: Art\, presented by Anna Cunningham\n\nClick “REGISTER” to sign up. If you prefer to register over the phone\, simply call 855-717-3222. \nAcknowledgement: This event post is sponsored by Bristol Myers Squibb as a part of our Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant\, vetted and valuable information to the Patient Worthy community.
URL:https://patientworthy.com/event/bristol-myers-squibb-ms-mindshift-event-series-4/
CATEGORIES:Multiple Sclerosis
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201029T190000
DTEND;TZID=America/New_York:20201029T200000
DTSTAMP:20260630T111551
CREATED:20200921T201704Z
LAST-MODIFIED:20200921T201704Z
UID:303163-1603998000-1604001600@patientworthy.com
SUMMARY:Intercept Pharmaceuticals' Learn About Primary Biliary Cholangitis Webinar
DESCRIPTION:Learn About Primary Biliary Cholangitis\nJoin us for an online event about primary biliary cholangitis (PBC). Don’t miss out on a live Q&A session with a Nurse Educator* and an inspiring story from a Patient Ambassador* who will share their journey with a treatment option used in conjunction with ursodeoxycholic acid (UDCA). \nTo register for this event\, click here. \n*PBC Ambassador and Nurse Educator are being compensated by Intercept Pharmaceuticals\, Inc. \nAcknowledgment: This event post is sponsored by Intercept Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant\, vetted and valuable information to the rare disease community.
URL:https://patientworthy.com/event/intercept-pharmaceuticals-learn-about-primary-biliary-cholangitis/
CATEGORIES:Primary Biliary Cholangitis
ORGANIZER;CN="Intercept%20Pharmaceuticals":MAILTO:info@interceptpharma.com
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