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PRODID:-//Ultragenyx Patient Advocacy - ECPv5.14.1//NONSGML v1.0//EN
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X-WR-CALNAME:Ultragenyx Patient Advocacy
X-ORIGINAL-URL:https://www.ultrarareadvocacy.com
X-WR-CALDESC:Events for Ultragenyx Patient Advocacy
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BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
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TZOFFSETFROM:-0400
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DTSTART:20211107T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20211207
DTEND;VALUE=DATE:20211208
DTSTAMP:20260403T191832
CREATED:20210805T151048Z
LAST-MODIFIED:20240917T145011Z
UID:10106-1638835200-1638921599@www.ultrarareadvocacy.com
SUMMARY:10th Anniversary RareVoice Awards
DESCRIPTION:Details coming soon!
URL:https://www.ultrarareadvocacy.com/event/10th-anniversary-rarevoice-awards/
LOCATION:Washington\, D.C.\, DC\, United States
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/RareVoice-Awards.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211020
DTEND;VALUE=DATE:20211021
DTSTAMP:20260403T191832
CREATED:20210805T150829Z
LAST-MODIFIED:20240917T145017Z
UID:10097-1634688000-1634774399@www.ultrarareadvocacy.com
SUMMARY:Rare Disease Scientific Workshop
DESCRIPTION:Details coming soon!
URL:https://www.ultrarareadvocacy.com/event/rare-disease-scientific-workshop/
LOCATION:Washington\, D.C.\, DC\, United States
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/rare-disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211002
DTEND;VALUE=DATE:20211003
DTSTAMP:20260403T191832
CREATED:20210805T150746Z
LAST-MODIFIED:20240917T145022Z
UID:10093-1633132800-1633219199@www.ultrarareadvocacy.com
SUMMARY:Newborn Screening Bootcamp
DESCRIPTION:The EveryLife Foundation for Rare Diseases and Expecting Health at Genetic Alliance invite you to a virtual five-part training series designed to educate and engage newborn screening stakeholders. \nThroughout the five sessions you will learn how to facilitate a pilot study\, build coalitions\, navigate the recommended uniform screening panel (RUSP) nomination process\, and prepare infrastructure to address challenges. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/newborn-screening-bootcamp/
LOCATION:Sacramento\, CA\, Sacramento\, CA\, United States
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Newborn-Screening-Bootcamp.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210914T080000
DTEND;TZID=America/New_York:20210915T170000
DTSTAMP:20260403T191832
CREATED:20210805T150629Z
LAST-MODIFIED:20240917T145028Z
UID:10090-1631606400-1631725200@www.ultrarareadvocacy.com
SUMMARY:RARE Patient Advocacy (un)Summit
DESCRIPTION:Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies. Due to the COVID-19 pandemic\, and the threat it poses to the health and safety of the rare disease community\, they replaced this highly anticipated event with the Global Genes LIVE! A RARE Patient Advocacy (un)Summit. \nThroughout September\, a variety of interactive and educational online events\, meet-ups\, workshops and performances will provide members of the rare disease community with opportunities to connect and engage with each other. Participants will gain insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can implement immediately to accelerate change. \nFind out more
URL:https://www.ultrarareadvocacy.com/event/rare-patient-advocacy-unsummit/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/global-genes-logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210910T080000
DTEND;TZID=America/New_York:20210911T170000
DTSTAMP:20260403T191832
CREATED:20210805T150543Z
LAST-MODIFIED:20240917T145033Z
UID:10087-1631260800-1631379600@www.ultrarareadvocacy.com
SUMMARY:Association for Glycogen Storage Disease Patient/Family/Medical Conference
DESCRIPTION:The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD\, their families\, and medical professionals involved in treatment or research of any type of GSD. The focus of these conferences is meeting other people and families affected by GSD\, gaining a better understanding of the GSDs and their implications\, and learning about the latest research findings and upcoming studies.  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/association-for-glycogen-storage-disease-patient-family-medical-conference/
LOCATION:Cleveland\, OH
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Association-for-Glycogen-Storage-Disease-PatientFamilyMedical-Conference.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210821
DTEND;VALUE=DATE:20210822
DTSTAMP:20260403T191832
CREATED:20210805T150409Z
LAST-MODIFIED:20240917T145039Z
UID:10082-1629504000-1629590399@www.ultrarareadvocacy.com
SUMMARY:Walk for Strength 2021
DESCRIPTION:Save the date! More information to come. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/walk-for-strength-2021/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/CCDS-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210813T080000
DTEND;TZID=America/New_York:20210814T170000
DTSTAMP:20260403T191832
CREATED:20210805T150337Z
LAST-MODIFIED:20240917T145045Z
UID:10080-1628841600-1628960400@www.ultrarareadvocacy.com
SUMMARY:ACD Virtual Conference 2021
DESCRIPTION:Save the date! More information to come. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/acd-virtual-conference-2021/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/CCDS-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210714T080000
DTEND;TZID=America/New_York:20210722T170000
DTSTAMP:20260403T191832
CREATED:20210805T150151Z
LAST-MODIFIED:20240917T145050Z
UID:10073-1626249600-1626973200@www.ultrarareadvocacy.com
SUMMARY:Virtual Rare Disease Week on Capitol Hill
DESCRIPTION:Rare Disease Week on Capitol Hill\, hosted by the Rare Disease Legislative Advocates (RDLA)\, a program of the EveryLife Foundation for Rare Diseases\, is designed to educate and activate advocates and to foster relationships within the community. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/virtual-rare-disease-week-on-capitol-hill/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Rare-Disease-Week-on-Capitol-Hill.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210619
DTEND;VALUE=DATE:20210620
DTSTAMP:20260403T191832
CREATED:20210805T145651Z
LAST-MODIFIED:20240917T145113Z
UID:10055-1624060800-1624147199@www.ultrarareadvocacy.com
SUMMARY:CDKL5 Alliance International Virtual Family Conference
DESCRIPTION:The CDKL5 Alliance’s International Virtual Family Conference will be ‘a la carte\,’ meaning participants will be able to visit their website on June 19 or later and view pre-recorded presentations from the speakers outlined in the agenda. All presentations will be in English with subtitles available in Spanish\, Italian\, French\, German\, Russian and Japanese. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/cdkl5-alliance-international-virtual-family-conference/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/cdkl5-alliance-conf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210618T080000
DTEND;TZID=America/New_York:20210627T170000
DTSTAMP:20260403T191832
CREATED:20210805T145817Z
LAST-MODIFIED:20240917T145119Z
UID:10062-1624003200-1624813200@www.ultrarareadvocacy.com
SUMMARY:Connected Together: 35th Annual National MPS Society Virtual Family Conference
DESCRIPTION:Mark your calendars to join NMPSS on June 19-20 and 26-27 for their 35th Annual Family Conference! The conference will be held virtually\, with sessions taking place across four days. There will be a kickoff the evening of June 18 with breakout sessions for families and individuals with MPS or ML. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/connected-together-35th-annual-national-mps-society-virtual-family-conference/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/MPS-conf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210515
DTEND;VALUE=DATE:20210516
DTSTAMP:20260403T191832
CREATED:20210805T145421Z
LAST-MODIFIED:20240917T145125Z
UID:10048-1621036800-1621123199@www.ultrarareadvocacy.com
SUMMARY:National MPS Society Maritime Gala
DESCRIPTION:Join the National MPS Society for an evening of intrigue and philanthropy at the historic Corinthian Yacht Club in Tiburon\, CA\, founded in 1886. This event will feature silent and live auctions\, cocktails\, hors d’oeuvres\, live entertainment\, and an exclusive VIP opportunity. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/national-mps-society-maritime-gala/
LOCATION:Tiburon\, CA\, Tiburon\, CA\, United States
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/National-MPS-Society-Maritime-Gala.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210222T080000
DTEND;TZID=America/New_York:20210305T170000
DTSTAMP:20260403T191832
CREATED:20210805T144627Z
LAST-MODIFIED:20240917T145130Z
UID:10025-1613980800-1614963600@www.ultrarareadvocacy.com
SUMMARY:Rare Across America
DESCRIPTION:Rare Disease Legislative Advocates (RDLA) staff will organize virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team will also help prepare advocates for their meetings\, provide legislative resource materials\, and host pre-meeting training webinars. \nNo prior advocacy experience is necessary. Registration for this event and all RDLA events are free for rare disease advocates. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/rare-across-america/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Rare-Across-America.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210208T080000
DTEND;TZID=America/New_York:20210212T170000
DTSTAMP:20260403T191832
CREATED:20210805T144346Z
LAST-MODIFIED:20240917T145138Z
UID:10016-1612771200-1613149200@www.ultrarareadvocacy.com
SUMMARY:17th Annual WORLDSymposium
DESCRIPTION:WORLDSymposium will conduct the 2021 annual research conference virtually. WORLDSymposium Virtual 2021 will include many of the core elements of the in-person conference with new innovations that the virtual platform allows. These changes will include new ways to connect with other attendees\, announce new research and trials\, and interact with sponsors. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/17th-annual-worldsymposium/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/17_Annual-WORLDSymposium.png
END:VEVENT
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