BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Ultragenyx Patient Advocacy - ECPv5.14.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Ultragenyx Patient Advocacy
X-ORIGINAL-URL:https://www.ultrarareadvocacy.com
X-WR-CALDESC:Events for Ultragenyx Patient Advocacy
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230201T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20260403T183109
CREATED:20230222T123016Z
LAST-MODIFIED:20240917T144525Z
UID:11938-1675238400-1677603600@www.ultrarareadvocacy.com
SUMMARY:Rare Liver Disease Month
DESCRIPTION:During the month of February\, the Global Liver Institute will lead the third annual Rare Liver Diseases Month to promote awareness and educate people about the diverse range of liver diseases.
URL:https://www.ultrarareadvocacy.com/event/rare-liver-disease-month/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_GlobalLiver.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230124T100000
DTEND;TZID=America/New_York:20230124T151500
DTSTAMP:20260403T183109
CREATED:20230222T122041Z
LAST-MODIFIED:20240917T144530Z
UID:11934-1674554400-1674573300@www.ultrarareadvocacy.com
SUMMARY:Externally led Patient Focused Drug Development (PFDD) Meeting on Cerebral Creatine Deficiency Syndromes (CCDS)
DESCRIPTION:The virtual meeting provides patients and caregivers with an opportunity to share their personal experiences regarding the symptoms and daily impact with CCDS to FDA representatives\, academic and scientific researchers\, medical professionals\, and pharmaceutical companies.
URL:https://www.ultrarareadvocacy.com/event/externally-led-patient-focused-drug-development-pfdd-meeting-on-cerebral-creatine-deficiency-syndromes-ccds/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/Jan.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221203
DTEND;VALUE=DATE:20221204
DTSTAMP:20260403T183109
CREATED:20210805T151002Z
LAST-MODIFIED:20240917T142105Z
UID:10103-1670025600-1670111999@www.ultrarareadvocacy.com
SUMMARY:International Day of Persons with Disabilities
DESCRIPTION:The United Nations’ day of international observance aims to promote an understanding of disability issues and mobilize support for the dignity\, rights\, and well-being of persons with disabilities. The term disability is used to refer to individual functioning\, including physical impairment\, sensory impairment\, cognitive impairment\, intellectual impairment\, mental illness\, and various types of chronic disease. This observance day also seeks to increase awareness of the importance of integrating persons with disabilities in every aspect of political\, social\, economic and cultural life. \nFor more information
URL:https://www.ultrarareadvocacy.com/event/international-day-of-persons-with-disabilities/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/International-Day-of-Persons-with-Disabilities.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221202
DTEND;VALUE=DATE:20221204
DTSTAMP:20260403T183109
CREATED:20221220T212940Z
LAST-MODIFIED:20240917T144611Z
UID:11839-1669939200-1670111999@www.ultrarareadvocacy.com
SUMMARY:FAST's 15th Annual Global Science Summit & Gala
DESCRIPTION:Foundation for Angelman Syndrome Therapeutics (FAST). \nFor more information
URL:https://www.ultrarareadvocacy.com/event/fasts-15th-annual-global-science-summit-gala/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/12/Fast.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221026T080000
DTEND;TZID=America/New_York:20221028T170000
DTSTAMP:20260403T183109
CREATED:20210805T150917Z
LAST-MODIFIED:20240917T144637Z
UID:10100-1666771200-1666976400@www.ultrarareadvocacy.com
SUMMARY:2022 PCORI Annual Meeting
DESCRIPTION:The 2022 PCORI Annual Meeting will feature keynotes\, plenaries\, and breakout sessions that highlight a range of timely and important topics around patient-centered research. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/2022-pcori-annual-meeting/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/PCORI.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220918
DTEND;VALUE=DATE:20220925
DTSTAMP:20260403T183109
CREATED:20210915T195815Z
LAST-MODIFIED:20240917T144714Z
UID:10521-1663459200-1664063999@www.ultrarareadvocacy.com
SUMMARY:Mitochondrial Disease Awareness Week
DESCRIPTION:During the third week of September\, the Mito community comes together to raise awareness for Mitochondrial Disease Awareness Week. \nThousands of families face the reality of living with mitochondrial disease. During Awareness Week\, MitoAction and Mito families do their part to educate others about mitochondrial disease. \nAwareness is important year-round but highlighting these issues during Mitochondrial Disease Awareness Week provides a time for people to come together and display the passion and strength of those working to improve the lives of those affected by Mito.
URL:https://www.ultrarareadvocacy.com/event/mitochondrial-disease-awareness-week/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/mitoaction-high-res-logo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220910T090000
DTEND;TZID=America/New_York:20220910T130000
DTSTAMP:20260403T183109
CREATED:20220303T202029Z
LAST-MODIFIED:20240917T144719Z
UID:11142-1662800400-1662814800@www.ultrarareadvocacy.com
SUMMARY:Long Beach Sprint to Save 5K Run and 1 Mile Walk
DESCRIPTION:Join the National MPS Society for the first annual Long Beach Sprint to Save event! This 5K run and 1 mile walk will be held at Shoreline Aquatic Park on September 10. \nLearn more and register
URL:https://www.ultrarareadvocacy.com/event/long-beach-sprint-to-save-5k-run-and-1-mile-walk/
LOCATION:Long Beach\, CA
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/Raleigh-Run-for-Rare.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220806T080000
DTEND;TZID=America/New_York:20220806T110000
DTSTAMP:20260403T183109
CREATED:20220303T201232Z
LAST-MODIFIED:20240917T144724Z
UID:11135-1659772800-1659783600@www.ultrarareadvocacy.com
SUMMARY:Nashville Rock and Roll 5K Run and 1 Mile Walk
DESCRIPTION:The Nashville Rock and Roll 5K Run and 1 Mile Walk will take place on Saturday\, August 6 as a part of the National MPS Society’s Annual Family Conference! Transportation will be provided to and from the event\, which will be held at Centennial Park. Check back for more information regarding departure times. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/nashville-rock-and-roll-5k-run-and-1-mile-walk/
LOCATION:Nashville\, TN
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:20220804
DTEND;VALUE=DATE:20220807
DTSTAMP:20260403T183109
CREATED:20220303T200807Z
LAST-MODIFIED:20240917T144729Z
UID:11130-1659571200-1659830399@www.ultrarareadvocacy.com
SUMMARY:National MPS Society 36th Annual Family Conference
DESCRIPTION:Save the date for the National MPS Society’s 36th Annual Family Conference. More details to come!  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/national-mps-society-36th-annual-family-conference/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/National-MPS-Society-36th-Annual-Family-Conference.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220722T080000
DTEND;TZID=America/New_York:20220724T170000
DTSTAMP:20260403T183109
CREATED:20210805T150250Z
LAST-MODIFIED:20240917T144735Z
UID:10076-1658476800-1658682000@www.ultrarareadvocacy.com
SUMMARY:International Metabolic Conference
DESCRIPTION:Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 3rd Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) held in Pittsburgh\, PA on July 22\, 23\, & 24\, 2022. \nIn partnership with Dr. Jerry Vockley and INFORM\, MitoAction will assemble leading experts to present to families\, caregivers\, family members and clinicians. The focus of the International Metabolic Conference is for families to learn more about disease management\, current clinical trials\, nutrition and the social needs of caring for a child or an adult with a rare metabolic disorder. This is a great opportunity for families from across the globe to virtually meet one another\, and have the opportunity to interact with professionals who specialize in metabolic disorders. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/international-metabolic-conference/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Int-Met-Conf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220714T080000
DTEND;TZID=America/New_York:20220716T170000
DTSTAMP:20260403T183109
CREATED:20210805T150109Z
LAST-MODIFIED:20240917T144741Z
UID:10070-1657785600-1657990800@www.ultrarareadvocacy.com
SUMMARY:The MAGIC Foundation’s 28th Annual Convention
DESCRIPTION:Join the MAGIC Foundation for an educational experience for parents of children living with an endocrine disorder. World renowned speakers from across the globe will present on physical health\, mental health\, insurance\, genetics\, education issues\, and so much more!  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/the-magic-foundations-28th-annual-convention/
LOCATION:Lombard\, IL\, Lombard\, IL\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/MAGIC_Foundation.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220709
DTEND;VALUE=DATE:20220711
DTSTAMP:20260403T183109
CREATED:20220308T151009Z
LAST-MODIFIED:20240917T144747Z
UID:11261-1657324800-1657497599@www.ultrarareadvocacy.com
SUMMARY:2022 OIF National Conference
DESCRIPTION:The 2022 OIF National Conference will be held virtually during the weekend of July 9\, 2022. More details to come!  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/2022-oif-national-conference/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/OI_Logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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:20260403T183109
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
END:VCALENDAR