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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;TZID=America/New_York:20210910T080000
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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
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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/
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