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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
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DTSTART:20220313T070000
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DTSTART:20221106T060000
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DTSTART:20230312T070000
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DTSTART:20231105T060000
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DTSTART:20240310T070000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241011
DTEND;VALUE=DATE:20241014
DTSTAMP:20260403T151005
CREATED:20230222T133341Z
LAST-MODIFIED:20240917T142201Z
UID:11968-1728604800-1728863999@www.ultrarareadvocacy.com
SUMMARY:XLH Day
DESCRIPTION:Each year\, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.
URL:https://www.ultrarareadvocacy.com/event/xlh-awareness-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_xlh.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240901T080000
DTEND;TZID=America/New_York:20240930T170000
DTSTAMP:20260403T151005
CREATED:20210805T150447Z
LAST-MODIFIED:20240917T142514Z
UID:10084-1725177600-1727715600@www.ultrarareadvocacy.com
SUMMARY:Newborn Screening Awareness Month
DESCRIPTION:In September\, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/newborn-screening-awareness-month/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/newborn_screening.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240601T080000
DTEND;TZID=America/New_York:20240630T170000
DTSTAMP:20260403T151005
CREATED:20230222T132923Z
LAST-MODIFIED:20240917T142521Z
UID:11965-1717228800-1719766800@www.ultrarareadvocacy.com
SUMMARY:Worldwide Awareness Month
DESCRIPTION:The month of June is meaningful to the CDKL5 community. Every year in June\, the CDKL5 community works to educate and raise awareness about the disorder.
URL:https://www.ultrarareadvocacy.com/event/worldwide-cdkl5-awareness-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_CDKL5AwarenessDay.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240515T080000
DTEND;TZID=America/New_York:20240515T170000
DTSTAMP:20260403T151005
CREATED:20230222T131833Z
LAST-MODIFIED:20240917T142528Z
UID:11959-1715760000-1715792400@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-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_NationalMps.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240506T080000
DTEND;TZID=America/New_York:20240506T170000
DTSTAMP:20260403T151005
CREATED:20230222T131240Z
LAST-MODIFIED:20240917T142534Z
UID:11956-1714982400-1715014800@www.ultrarareadvocacy.com
SUMMARY:National OI Awareness Week/International OI Day
DESCRIPTION:During this week the Osteogenesis Imperfecta (OI) community members educate and raise awareness on the condition. They celebrate Wishbone Day\, the international Day of Awareness for OI.
URL:https://www.ultrarareadvocacy.com/event/national-oi-awareness-week-international-oi-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_OIAwarenessWeek.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T080000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260403T151005
CREATED:20230222T130106Z
LAST-MODIFIED:20240917T142546Z
UID:11950-1709193600-1709226000@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 decision makers and the general public about rare diseases and their impact on the lives of people affected.
URL:https://www.ultrarareadvocacy.com/event/rare-disease-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_rarediseaseday.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240215T080000
DTEND;TZID=America/New_York:20240215T170000
DTSTAMP:20260403T151005
CREATED:20230222T125616Z
LAST-MODIFIED:20240917T142552Z
UID:11947-1707984000-1708016400@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.
URL:https://www.ultrarareadvocacy.com/event/international-angelman-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_angelmanday.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240201T080000
DTEND;TZID=America/New_York:20240201T170000
DTSTAMP:20260403T151005
CREATED:20230222T163014Z
LAST-MODIFIED:20240917T142556Z
UID:11975-1706774400-1706806800@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.
URL:https://www.ultrarareadvocacy.com/event/ccds-awareness-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/March23.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230721T080000
DTEND;TZID=America/New_York:20230723T170000
DTSTAMP:20260403T151005
CREATED:20230704T175348Z
LAST-MODIFIED:20240917T142604Z
UID:12226-1689926400-1690131600@www.ultrarareadvocacy.com
SUMMARY:MitoAction & INFORM International Metabolic Conference
DESCRIPTION:MitoAction & INFORM International Metabolic for Families and Individuals Impacted by Fatty Acid Oxidation Disorders \nDenver\, CO \nMitoAction & INFORM will host the 4th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) in Denver\, CO\, from July 21–23. It is an event dedicated to advancing knowledge and collaboration in the field of mitochondrial and metabolic disorders.
URL:https://www.ultrarareadvocacy.com/event/mitoaction-inform-international-metabolic-conference/
LOCATION:Denver\, CO
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/07/MitoAction-and-INFORM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230629T080000
DTEND;TZID=America/New_York:20230702T170000
DTSTAMP:20260403T151005
CREATED:20230222T133808Z
LAST-MODIFIED:20240917T142610Z
UID:11971-1688025600-1688317200@www.ultrarareadvocacy.com
SUMMARY:PPMD’S 2023 Annual Conference Dallas\, TX
DESCRIPTION:The Parent Project Muscular Dystrophy (PPMD) will host the 2023 Annual Conference from June 29 – July 2. The conference brings together families\, physicians\, researchers\, caregivers\, industry partners and those living with Duchenne and Becker to learn the latest progress in the fight to end Duchenne.
URL:https://www.ultrarareadvocacy.com/event/ppmds-2023-annual-conference-dallas-tx/
LOCATION:Scottsdale\, AZ
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_PPMDS2023.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230610T080000
DTEND;TZID=America/New_York:20230611T170000
DTSTAMP:20260403T151005
CREATED:20230222T132406Z
LAST-MODIFIED:20240917T143539Z
UID:11962-1686384000-1686502800@www.ultrarareadvocacy.com
SUMMARY:2023 OIFE Annual General Meeting
DESCRIPTION:The OIFE Annual General Meeting (AGM) will be held in Stockholm Sweden from June 10-11\, 2023. All organizations are invited to attend and to speak at the annual general meeting\, but only ordinary (European) member organizations have a vote.
URL:https://www.ultrarareadvocacy.com/event/2023-oife-annual-general-meeting/
LOCATION:Stockhome\, Sweden
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_OIFE.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230213T080000
DTEND;TZID=America/New_York:20230219T170000
DTSTAMP:20260403T151005
CREATED:20230222T124727Z
LAST-MODIFIED:20240917T144519Z
UID:11944-1676275200-1676826000@www.ultrarareadvocacy.com
SUMMARY:Duchenne Muscular Dystrophy (DMD) Awareness Week
DESCRIPTION:Duchenne Muscular Dystrophy Awareness Week begins on February 13th through the 19th to call national attention to DMD\, support patients and families suffering from this rare disease\, and raise money for research. DMD is a genetic disorder that cause gradual loss of muscle function and weakness.
URL:https://www.ultrarareadvocacy.com/event/duchenne-muscular-dystrophy-dmd-awareness-week/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_Duchenne.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230201T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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:20260403T151005
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
END:VCALENDAR