BEGIN:VCALENDAR
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PRODID:-//Cystinosis Research Network - ECPv6.17.1//NONSGML v1.0//EN
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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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BEGIN:VTIMEZONE
TZID:UTC
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TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20251118T193000
DTEND;TZID=UTC:20251118T203000
DTSTAMP:20251006T155754Z
CREATED:20251006T155754Z
LAST-MODIFIED:20251006T155754Z
UID:5086-1763494200-1763497800@cystinosis.org
SUMMARY:Zoom night - November
DESCRIPTION:Join our next Zoom night on Tuesday\, November 18th.  \nCalls are open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nNovember 18\n 7:30p ET\nZoom link: https://tinyurl.com/7s2datft \n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-november/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20230227T222541Z
CREATED:20220810T155023Z
LAST-MODIFIED:20230227T222541Z
UID:3938-1689206400-1689465599@cystinosis.org
SUMMARY:2023 Family Conference - Nashville
DESCRIPTION:The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville\, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. \nFor agenda\, travel scholarships and more details\, click here. \nWe look forward to seeing you there!
URL:https://cystinosis.org/event/2023-family-conference-dates-location/
LOCATION:Nashville Marriott at Vanderbilt University\, 2555 West End Avenue\, Nashville\, TN\, 37203\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20220503T141259Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210911T160000
DTEND;TZID=UTC:20210911T170000
DTSTAMP:20210910T144633Z
CREATED:20210910T143200Z
LAST-MODIFIED:20210910T144633Z
UID:3379-1631376000-1631379600@cystinosis.org
SUMMARY:Cystinosis Sessions: September Video Call
DESCRIPTION:Saturday\, September 11th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. \nTOPICS  \nThe month’s central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements\, mental and physical well-being\, side effects encountered after receiving COVID-19 vaccines\, the booster shot available for immunocompromised individuals\, personal experiences\, and more. \nALL are invited to attend. Please note: this is not just for adults living with cystinosis. \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading 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-september-video-call/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20210804T192959Z
CREATED:20210804T192959Z
LAST-MODIFIED:20210804T192959Z
UID:3339-1628352000-1628355600@cystinosis.org
SUMMARY:Cystinosis Sessions: August Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. \nTOPICS \nALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18\, 2021). \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading 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-august-video-call/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20200917T162806Z
CREATED:20200917T162806Z
LAST-MODIFIED:20200917T162806Z
UID:2579-1602702000-1602707400@cystinosis.org
SUMMARY:Cystinosis Gene Therapy & Research Updates: Virtual Meetup
DESCRIPTION:Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University School of Medicine and Fernanda Copeland\, MS\, RD. Head\, Global Patient Advocacy & Engagement\, AVROBIO are our guest speakers. \n  \nRegister today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA. \nFREE welcome kits are here – availability is limited.
URL:https://cystinosis.org/event/cystinosis-gene-therapy-research-updates-virtual-meetup/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/research.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200229
DTEND;VALUE=DATE:20200301
DTSTAMP:20200220T161841Z
CREATED:20200218T151504Z
LAST-MODIFIED:20200220T161841Z
UID:2358-1582934400-1583020799@cystinosis.org
SUMMARY:Podcast: Staying Positive while living with Cystinosis
DESCRIPTION:Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. \nLead by the Adult Leadership Advisory Board (ALAB)\, this series will focus on issues specific to our rare disease. \nThe initial podcast episode launches on Rare Disease Day – February 29\, 2020. \nThis episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree. \nALAB hosts will be Jana Healy\, Sara Healy\, Steve Scheudler\, and Cheryl Simoens. All four are adults living with cystinosis. \nThe episode will be approximately 1 hour in length. \nSubscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday\, February 29th. We hope you tune in!
URL:https://cystinosis.org/event/podcast-staying-positive-while-living-with-cystinosis/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20190904T171910Z
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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