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METHOD:PUBLISH
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
END:DAYLIGHT
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TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
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TZOFFSETTO:-0400
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DTSTART:20220313T070000
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DTSTART:20221106T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260403T175043
CREATED:20220308T135927Z
LAST-MODIFIED:20240917T144753Z
UID:11255-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:Third Annual Cross Country Challenge Kickoff
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/third-annual-cross-country-challenge-kickoff/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260403T175043
CREATED:20220308T134750Z
LAST-MODIFIED:20240917T144759Z
UID:11252-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:Virtual Capitol Hill Visits with Senators and Representatives
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/virtual-capitol-hill-visits-with-senators-and-representatives/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260403T175043
CREATED:20210805T145733Z
LAST-MODIFIED:20240917T144804Z
UID:10059-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:XLH Awareness Day
DESCRIPTION:June 23 is X-linked hypophosphatemia (XLH) Awareness Day. Each year\, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/xlh-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/XLH-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220622
DTEND;VALUE=DATE:20220627
DTSTAMP:20260403T175043
CREATED:20220308T150519Z
LAST-MODIFIED:20240917T144809Z
UID:11257-1655856000-1656287999@www.ultrarareadvocacy.com
SUMMARY:PPMD Annual Conference
DESCRIPTION:A comprehensive annual\, international conference focused entirely on Duchenne. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/ppmd-annual-conference/
LOCATION:Scottsdale\, AZ
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/PPMD-Logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220619T080000
DTEND;TZID=America/New_York:20220623T170000
DTSTAMP:20260403T175043
CREATED:20210805T150018Z
LAST-MODIFIED:20240917T144815Z
UID:10067-1655625600-1656003600@www.ultrarareadvocacy.com
SUMMARY:DIA 2022 Global Annual Meeting
DESCRIPTION:The DIA 2022 Global Annual Meeting brings together thousands of innovators from around the globe to discuss updates in the ever-changing field of life sciences. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/dia-2022-global-annual-meeting/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/DIA_2022.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220618
DTSTAMP:20260403T175043
CREATED:20210805T145521Z
LAST-MODIFIED:20240917T144821Z
UID:10052-1655424000-1655510399@www.ultrarareadvocacy.com
SUMMARY:Worldwide CDKL5 Awareness Day
DESCRIPTION:Each June\, the CDKL5 community works to educate and raise awareness about the disorder. June has special meaning to the CDKL5 community\, and June 17 is Worldwide CDKL5 Awareness Day. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/worldwide-cdkl5-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/worldwide_cdkl5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220615
DTEND;VALUE=DATE:20220616
DTSTAMP:20260403T175043
CREATED:20220308T155701Z
LAST-MODIFIED:20240917T144827Z
UID:11284-1655251200-1655337599@www.ultrarareadvocacy.com
SUMMARY:Spontaneous Parent Group Meeting
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/spontaneous-parent-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:20220611T073000
DTEND;TZID=America/New_York:20220611T170000
DTSTAMP:20260403T175043
CREATED:20220303T194604Z
LAST-MODIFIED:20240917T144832Z
UID:11116-1654932600-1654966800@www.ultrarareadvocacy.com
SUMMARY:Million Dollar Bike Ride
DESCRIPTION:The Penn Medicine Orphan Disease Center (ODC) will host the 9th Annual Million Dollar Bike Ride on Saturday\, June 11\, 2022\, to raise money for rare disease research. \nLearn more and register
URL:https://www.ultrarareadvocacy.com/event/million-dollar-bike-ride/
LOCATION:Philadelphia\, PA
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/Million-Dollar-Bike-Ride.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220608
DTEND;VALUE=DATE:20220611
DTSTAMP:20260403T175043
CREATED:20220303T194034Z
LAST-MODIFIED:20240917T144837Z
UID:11113-1654646400-1654905599@www.ultrarareadvocacy.com
SUMMARY:Global Genes 2022 RARE Drug Development Symposium
DESCRIPTION:The RARE Drug Development Symposium\, in partnership with the Orphan Disease Center of the University of Pennsylvania\, is designed to connect\, educate\, and inspire rare disease participants\, whether they’re beginning or advanced. This program convenes key stakeholders across patient advocacy\, research\, and drug development to engage on emerging challenges\, and new frameworks to advance rare disease research and therapeutic development.  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/global-genes-2022-rare-drug-development-symposium/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/rare-drug-Development-Symposium.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220604
DTEND;VALUE=DATE:20220605
DTSTAMP:20260403T175043
CREATED:20220308T154959Z
LAST-MODIFIED:20240917T144843Z
UID:11282-1654300800-1654387199@www.ultrarareadvocacy.com
SUMMARY:Los Angeles Regional Meet-up
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/los-angeles-regional-meet-up/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220527
DTEND;VALUE=DATE:20220530
DTSTAMP:20260403T175043
CREATED:20220308T154554Z
LAST-MODIFIED:20240917T144848Z
UID:11279-1653609600-1653868799@www.ultrarareadvocacy.com
SUMMARY:CureDuchenne Futures Conference
DESCRIPTION:This conference focuses on bringing education\, resources\, and connection to the Duchenne community in a family-friendly environment. \nLearn more and register
URL:https://www.ultrarareadvocacy.com/event/cureduchenne-futures-conference/
LOCATION:Orlando\, FL
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/cure_duchenne_logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220515
DTEND;VALUE=DATE:20220516
DTSTAMP:20260403T175043
CREATED:20210805T145256Z
LAST-MODIFIED:20240917T144854Z
UID:10045-1652572800-1652659199@www.ultrarareadvocacy.com
SUMMARY:International MPS Awareness Day
DESCRIPTION:Every year on May 15\, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed\, think about the loved ones who have been lost\, thank doctors and scientists dedicated to finding cures\, and acknowledge parents\, siblings\, and caregivers who work tirelessly to support those with MPS and ML.
URL:https://www.ultrarareadvocacy.com/event/international-mps-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/MPS-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220501T100000
DTEND;TZID=America/New_York:20220501T140000
DTSTAMP:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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:20260403T175043
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
END:VCALENDAR