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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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DTSTART:20210314T070000
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DTSTART:20211107T060000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220501T100000
DTEND;TZID=America/New_York:20220501T140000
DTSTAMP:20260403T143900
CREATED:20220303T193219Z
LAST-MODIFIED:20240917T144906Z
UID:11110-1651399200-1651413600@www.ultrarareadvocacy.com
SUMMARY:Napa MPS Race for a Cure
DESCRIPTION:Join the National MPS Society in Napa\, California for the 6th Annual Napa MPS Race for a Cure on May 1\, 2022. This event will be held at Kennedy Park and will feature a 5K run\, 1 mile walk\, family picnic\, raffle\, and silent auction! \nRegister
URL:https://www.ultrarareadvocacy.com/event/napa-mps-race-for-a-cure/
LOCATION:Napa\, CA
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/Raleigh-Run-for-Rare.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220420
DTEND;VALUE=DATE:20220421
DTSTAMP:20260403T143900
CREATED:20220308T154302Z
LAST-MODIFIED:20240917T144910Z
UID:11277-1650412800-1650499199@www.ultrarareadvocacy.com
SUMMARY:Adolescent/Young Adult Group Meeting
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/adolescent-young-adult-group-meeting/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220420
DTEND;VALUE=DATE:20220421
DTSTAMP:20260403T143900
CREATED:20220308T154148Z
LAST-MODIFIED:20240917T144915Z
UID:11275-1650412800-1650499199@www.ultrarareadvocacy.com
SUMMARY:Aging with XLH Group Meeting
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/aging-with-xlh-group-meeting/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220326T080000
DTEND;TZID=America/New_York:20220326T120000
DTSTAMP:20260403T143900
CREATED:20220303T190917Z
LAST-MODIFIED:20240917T144920Z
UID:11107-1648281600-1648296000@www.ultrarareadvocacy.com
SUMMARY:Raleigh Run for Rare
DESCRIPTION:Join the National MPS Society at Dorothea Dix Park on March 26th for the Raleigh Run for Rare! This event will feature a 5K run\, 1 mile walk\, and post-run family picnic at Harvey Hill. \nRegister
URL:https://www.ultrarareadvocacy.com/event/raleigh-run-for-rare/
LOCATION:Raleigh\, NC
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/Raleigh-Run-for-Rare.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220323
DTEND;VALUE=DATE:20220324
DTSTAMP:20260403T143900
CREATED:20220308T153923Z
LAST-MODIFIED:20240917T144925Z
UID:11272-1647993600-1648079999@www.ultrarareadvocacy.com
SUMMARY:Advocacy Webinar and Virtual Capitol Hill Registration Kickoff
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/advocacy-webinar-and-virtual-capitol-hill-registration-kickoff/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220313T080000
DTEND;TZID=America/New_York:20220316T170000
DTSTAMP:20260403T143900
CREATED:20210805T145200Z
LAST-MODIFIED:20240917T144930Z
UID:10042-1647158400-1647450000@www.ultrarareadvocacy.com
SUMMARY:2022 MDA Clinical & Scientific Conference
DESCRIPTION:The 2022 MDA Virtual Clinical & Scientific Conference will take place March 13-16\, in a hybrid environment\, which will include scheduled live-broadcast sessions\, on-demand videos\, networking sessions\, exhibits\, and poster sessions. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/2022-mda-clinical-scientific-conference/
LOCATION:Orlando\, FL
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/2021-MDA-Clinical-Scientific-Conference.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220310
DTEND;VALUE=DATE:20220311
DTSTAMP:20260403T143900
CREATED:20220303T185532Z
LAST-MODIFIED:20220303T185532Z
UID:11090-1646870400-1646956799@www.ultrarareadvocacy.com
SUMMARY:MitoAction FAOD Monthly Support Call
DESCRIPTION:Join MitoAction and call host\, FAOD Mom Stephanie Harry\, on the second Thursday of each month for a support call for families affected by fatty acid oxidation disorders (FAOD). This call is a place where you can openly chat about the joys\, challenges\, and questions that arise from living with FAOD.  \nRegister
URL:https://www.ultrarareadvocacy.com/event/mitoaction-faod-monthly-support-call-2/2022-03-10/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/mitoaction-high-res-logo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220301
DTEND;VALUE=DATE:20220401
DTSTAMP:20260403T143900
CREATED:20210805T144751Z
LAST-MODIFIED:20240917T144941Z
UID:10031-1646092800-1648771199@www.ultrarareadvocacy.com
SUMMARY:Wilson Disease Awareness Month
DESCRIPTION:
URL:https://www.ultrarareadvocacy.com/event/wilson-disease-awareness-month/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260403T143900
CREATED:20210805T144719Z
LAST-MODIFIED:20240917T144947Z
UID:10028-1646006400-1646092799@www.ultrarareadvocacy.com
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decisionmakers and the general public about rare diseases and their impact on the lives of people affected. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/rare-disease-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Rare-Disease-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220215
DTEND;VALUE=DATE:20220216
DTSTAMP:20260403T143900
CREATED:20210805T144512Z
LAST-MODIFIED:20240917T144955Z
UID:10022-1644883200-1644969599@www.ultrarareadvocacy.com
SUMMARY:International Angelman Day
DESCRIPTION:The purpose of International Angelman Day is to raise awareness of the condition\, mobilize people to action\, encourage fundraising\, promote research and educational resources\, and remember those people with Angelman who are no longer with us. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/international-angelman-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/International-Angelman-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220201
DTEND;VALUE=DATE:20220202
DTSTAMP:20260403T143900
CREATED:20210805T144145Z
LAST-MODIFIED:20240917T145000Z
UID:10013-1643673600-1643759999@www.ultrarareadvocacy.com
SUMMARY:CCDS Awareness Day
DESCRIPTION:February 1 is Cerebral Creatine Deficiency Syndrome (CCDS) Awareness Day! Find out how you can celebrate this day and help spread awareness of CCDS in your community. \nLearn more.
URL:https://www.ultrarareadvocacy.com/event/ccds-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/CCDS-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211208
DTEND;VALUE=DATE:20211209
DTSTAMP:20260403T143900
CREATED:20210805T151131Z
LAST-MODIFIED:20240917T145005Z
UID:10109-1638921600-1639007999@www.ultrarareadvocacy.com
SUMMARY:EveryLife Foundation Community Congress Annual Meeting
DESCRIPTION:The Community Congress is a membership-based program dedicated to bringing patient organizations\, industry leaders\, and other rare disease stakeholders together. The Congress is a strategic advisory council\, providing advice and insight on urgent policy issues and EveryLife Foundation programs and initiatives. It is comprised of four working groups that work on self-selected projects to advance policy for rare disease patients. \nLearn More
URL:https://www.ultrarareadvocacy.com/event/everylife-foundation-community-congress-annual-meeting/
LOCATION:Washington\, D.C.\, DC\, United States
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/EveryLife-Foundation-Community-Congress-Annual-Meeting.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211207
DTEND;VALUE=DATE:20211208
DTSTAMP:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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:20260403T143900
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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