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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220709T160000
DTEND;TZID=UTC:20220709T170000
DTSTAMP:20260513T040230
CREATED:20220622T222003Z
LAST-MODIFIED:20220622T222003Z
UID:3883-1657382400-1657386000@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:Founding ALAB member\, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday\, July 9 at 4:00pm ET. Agenda items include the AZ study\, open discussion and information on the ALAB’s call for new applicants.  \nCalls are held quarterly – we hope you are able to join us!  \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nNew to Zoom? We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-july-video-call-2/
CATEGORIES:Gatherings/Conferences
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260513T040230
CREATED:20220330T152849Z
LAST-MODIFIED:20220503T141259Z
UID:3693-1651881600-1651967999@cystinosis.org
SUMMARY:5th Annual Cystinosis Awareness Day
DESCRIPTION:On May 7\, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. \nThis is an opportunity to educate the world about cystinosis\, a rare disease that impacts 2\,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: \n\nCheck out the Cystinosis Warrior Impact Program. A brand new initiative aimed at impacting each and every person living with cystinosis.\nAwareness Day Giveaway. As a thank you for growing with the CRN\, we are sending plantable awareness ribbons loaded with wildflower seeds. Request yours here.\nAdvocate. Share a snapshot or your perspective on living cystinosis with the people around you; in person or online with #cystinosisaware.\nResearch. Volunteer for research studies or make a donation.\nFor more information or additional ideas\, email info@cystinosis.org.\n\nWe appreciate your support!
URL:https://cystinosis.org/event/5th-annual-cystinosis-awareness-day/
CATEGORIES:Gatherings/Conferences
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;TZID=UTC:20201006T190000
DTEND;TZID=UTC:20201006T203000
DTSTAMP:20260513T040230
CREATED:20200917T153750Z
LAST-MODIFIED:20200917T153750Z
UID:2576-1602010800-1602016200@cystinosis.org
SUMMARY:Cystinosis & Mental Health: Virtual Meetup
DESCRIPTION:Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed psychologist\, Dr. Cortney Taylor Zimmerman will guide the meetup. \nRegister today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ. \nWelcome kits are here – with limited availability.
URL:https://cystinosis.org/event/cystinosis-mental-health-virtual-meetup/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/mentalhealth.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20260513T040230
CREATED:20190904T170703Z
LAST-MODIFIED:20190904T171910Z
UID:1676-1568764800-1569023999@cystinosis.org
SUMMARY:Global Genes: Rare Patient Advocacy Summit
DESCRIPTION:On behalf of the cystinosis community\, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. \nGlobal Genes has more information on their website and FAQs page. “As the largest gathering of rare disease patients\, caregivers\, thought leaders and other rare disease stakeholders in the world\, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.” \n \nAbove: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit. \n  \n  \n 
URL:https://cystinosis.org/event/global-genes-rare-patient-advocacy-summit/
LOCATION:Sheraton San Diego Hotel & Marina\, 1380 Harbor Island Drive\, San Diego\, CA\, 92101\, United States
CATEGORIES:Gatherings/Conferences
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