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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20210101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220427T200000
DTEND;TZID=UTC:20220427T210000
DTSTAMP:20260522T224218
CREATED:20220420T231015Z
LAST-MODIFIED:20220420T231159Z
UID:3737-1651089600-1651093200@cystinosis.org
SUMMARY:Cystaran Eye Drops Virtual Town Hall
DESCRIPTION:On Wednesday April 27\, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock\, the discussion agenda will cover recent approval and availability and an interactive Q&A session. Open to residents of the U.S.  \nQuestions can be submitted in advance to cgreeley@cystinosis.org or live during the Zoom session. Use this link to tune in on April 27 at 8:00pm ET / 7:00pm CT / 6:00p MT / 5:00pm PT: https://us06web.zoom.us/j/83279423967 Passcode: 451092
URL:https://cystinosis.org/event/cystaran-eye-drops-virtual-town-hall/
CATEGORIES:Gatherings/Conferences
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260522T224218
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
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/03/CAD_dateheader.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220618T090000
DTEND;TZID=UTC:20220618T140000
DTSTAMP:20260522T224218
CREATED:20220311T004635Z
LAST-MODIFIED:20220315T194711Z
UID:3662-1655542800-1655560800@cystinosis.org
SUMMARY:2nd Annual SC Golf Fundraiser
DESCRIPTION:Gail Potts and her South Carolina team are back at it! \nAfter a successful inaugural event last summer\, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research\, family support and education for those impacted by cystinosis.    \nThis year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today. \nIf you can’t make it to Myrtle Beach\, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page. \nQuestions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.  \nCheck out this highlights reel from the 2021 golf outing on our YouTube channel. \nThank you for visiting!
URL:https://cystinosis.org/event/2nd-annual-south-carolina-golf-fundraiser/
LOCATION:Wild Wing Avocet Golf Course\, 1000 Wild Wing Boulevard\, Conway\, South Carolina\, 29526
CATEGORIES:Fundraising Events
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220707
DTEND;VALUE=DATE:20220711
DTSTAMP:20260522T224218
CREATED:20220113T163728Z
LAST-MODIFIED:20220802T183522Z
UID:3556-1657152000-1657497599@cystinosis.org
SUMMARY:CNE International Conference
DESCRIPTION:This summer\, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven\, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10. \nAccess details here including: \n\nConference website\nRegistration page\nHotel and lodging info\nSession details click here\nQuestions? Email cystinose@ziggo.nl\n\nCall for abstracts! \n\n\n\nDuring the family conference\, a poster session for young researchers will be held\, which is intended to inform families and those living with cystinosis about their relevant research in the cystinosis field. Its primary aim is to fuel hope in people dealing with cystinosis by demonstrating the usefulness and impact of your research on patients’ everyday life\, and drawing the perspectives for a better future. Learn more here. \n\n\n\nCNE is an umbrella grouping of patient support\, advocacy and research organizations in Europe and beyond. \nPost-conference update  \nThe organization of the 3rd CNE International Cystinosis Conference would like to offer all interested parties the opportunity to view the video recordings in 8 languages and watch the presentations. \nYou can find everything about the conference at https://cystinosis.eu. \n 
URL:https://cystinosis.org/event/cne-international-conference/
LOCATION:MTC1 Maria-Theresiacollege\, Sint-Michielsstraat 6\, 3000 Leuven\, Belgium
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220709T160000
DTEND;TZID=UTC:20220709T170000
DTSTAMP:20260522T224218
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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