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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;VALUE=DATE:20250507
DTEND;VALUE=DATE:20250508
DTSTAMP:20250505T211333Z
CREATED:20250317T152951Z
LAST-MODIFIED:20250505T211333Z
UID:4958-1746576000-1746662399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2025
DESCRIPTION:Now in it’s eighth year\, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? \nThere are many ways to show your support. \n\nBe Seen\, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further\, share a fact about cystinosis or share something you wish others knew\n\nAsk Me Anything (AMA). AMA is a powerful way to raise awareness by connecting\, sharing\, and engaging by openly answering questions about a topic\, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers\, email info@cystinosis.org or comment on our socials\n\nDouble Your Donation Days. From May 1–15\, 2025\, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today\nVisit our How to Help page for more\n\n 
URL:https://cystinosis.org/event/8th-annual-cystinosis-awareness-day/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250318T190000
DTEND;TZID=UTC:20250318T203000
DTSTAMP:20250305T204109Z
CREATED:20250305T203850Z
LAST-MODIFIED:20250305T204109Z
UID:4900-1742324400-1742329800@cystinosis.org
SUMMARY:Family Zoom Night - March
DESCRIPTION:Join us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences\, ask questions\, and connect with others. Led by our Vice President of Family Support\, Chelsea Meschke. \n\nMarch 18\, 2025\n7:00pm Eastern\nFor Zoom access\, visit https://tinyurl.com/t6zek7b2\n\nEmail Chelsea with any questions at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night-march/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
LOCATION:https://cystinosis.org/event/family-zoom-night-march/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20250311T192303Z
CREATED:20250205T165010Z
LAST-MODIFIED:20250311T192303Z
UID:4868-1740700800-1740787199@cystinosis.org
SUMMARY:Rare Disease Day 2025
DESCRIPTION:Rare Disease Day is February 28\, 2025. \nIt is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease\, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here. \nThe 2025 theme: More than you can image.  \nWe are asking the cystinosis community to raise your voice and provide a glimpse into what life is like living with a rare disease. Our goal is to fill in the blank below and share with the broader community via social media and/or the CRN newsletter. \n\nLiving with cystinosis is more ___________ than you can imagine. \nSend in your answer along with a photo or create a video expressing your thoughts. Email to info@cystinosis.org.\n\n\nOther ways to be a part of Rare Disease Day 2025 \n\n\n\nUS Residents – EveryLife Foundation for Rare Diseases created a petition to support steady and robust federal agency leadership\, federal biomedical research funding\, and public health agency support.\n\nIf this cause resonates with you\, lend your voice by signing and sharing here.\n\n\nOn February 28\, landmarks around the world will light up in Rare Disease Day colors. If you can\, visit a lit-up landmark near you and take a photo! No landmark nearby? Light up your home with Rare Disease Day colors—purple\, pink\, green\, and blue—and share a photo.\nShare a Fact About Cystinosis. Raise awareness by posting a fact about cystinosis on social media or have a discussion within your circle of family\, friends\, schools\, places of worship\, etc. Not sure what to share? Visit our education section.\nConnect and Advocate. Share your experience with cystinosis in an email\, blog\, or social post. Tag your representatives and ask them to support rare disease research and policies.\nGet Creative. Write a poem\, draw a picture\, or create something that represents your cystinosis journey. Share it or send to us to showcase.\n\n\n\nNo matter how you choose to participate\, your voice makes a difference!
URL:https://cystinosis.org/event/rare-disease-day-2025/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2025/02/FINAL_RDD-2025_Pledge-Card_portrait_English.zip.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250211T183000
DTEND;TZID=UTC:20250211T193000
DTSTAMP:20250305T203155Z
CREATED:20250205T153509Z
LAST-MODIFIED:20250305T203155Z
UID:4863-1739298600-1739302200@cystinosis.org
SUMMARY:Family Zoom Night - February
DESCRIPTION:CRN Family Zoom Night \nAll are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share thoughts\, express our feelings\, and come together. Use this link to log into the meeting. We hope to see you there! Questions? Email Chelsea Meschke at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
LOCATION:https://cystinosis.org/event/family-zoom-night/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240826T180000
DTEND;TZID=UTC:20240826T190000
DTSTAMP:20240819T210516Z
CREATED:20240819T210516Z
LAST-MODIFIED:20240819T210516Z
UID:4788-1724695200-1724698800@cystinosis.org
SUMMARY:Adults August Meetup
DESCRIPTION:The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma. \nSpecial guest is Kerry Heckman\, a licensed therapist from Seattle\, Washington. Register here to take part in the discussion.
URL:https://cystinosis.org/event/adults-august-meetup/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240729T150000
DTEND;TZID=UTC:20240729T160000
DTSTAMP:20240716T141813Z
CREATED:20240716T141813Z
LAST-MODIFIED:20240716T141813Z
UID:4772-1722265200-1722268800@cystinosis.org
SUMMARY:Adult July Meetup - Disability and Cystinosis
DESCRIPTION:For Disability Pride Month\, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel\, a cystinosis warrior\, advocate and rare disease ally. \nRegistration is free to attend the event on July 29 at 3pm ET/2pm CT.
URL:https://cystinosis.org/event/adult-july-meetup-disability-and-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240725
DTEND;VALUE=DATE:20240728
DTSTAMP:20240308T195134Z
CREATED:20240308T192006Z
LAST-MODIFIED:20240308T195134Z
UID:4644-1721865600-1722124799@cystinosis.org
SUMMARY:Cystinosis Network Europe International Conference
DESCRIPTION:Registration for the Cystinosis Network Europe (CNE) International Conference\, hosted by Cystinosis Foundation UK in Manchester in July are now open!\nRegister here.\nScientific meeting agenda\nFamily meeting agenda\n\nCNE is offering assistance to families who will find the financial burden of travelling very high. We are looking forward to an amazing family and community event in Manchester in the summer and hope to see you and your families there!\n\nFor questions\, contact Denise Dunn at denise.dunne@cystinosis.ie.
URL:https://cystinosis.org/event/cystinosis-network-europe-international-conference/
LOCATION:Manchester\, England\, Manchester\, United Kingdom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis.ie
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240722T190000
DTEND;TZID=America/New_York:20240722T203000
DTSTAMP:20240722T134426Z
CREATED:20240722T134334Z
LAST-MODIFIED:20240722T134426Z
UID:4776-1721674800-1721680200@cystinosis.org
SUMMARY:School Prep + Cystinosis (virtual)
DESCRIPTION:A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom\, this meeting is for you!\nJoin the Zoom call Monday\, July 22 at 7pm ET.We will discuss– Individual Education Plans (IEPs) – 504 plans – Medication schedules– Overall support strategies …and more\n\nNo registration needed. Use this link when it is time for the meeting.\nWe hope to see you Monday night for an engaging conversation.
URL:https://cystinosis.org/event/school-prep-cystinosis-virtual/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240531T074500
DTEND;TZID=UTC:20240531T191500
DTSTAMP:20240528T202402Z
CREATED:20240220T214443Z
LAST-MODIFIED:20240528T202402Z
UID:4631-1717141500-1717182900@cystinosis.org
SUMMARY:Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
DESCRIPTION:The CRN is hosting an in-person event for healthcare professionals. \nJoin us May 31\, 2024 at The New York Academy of Medicine. \nHealthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals\, refreshments and cocktail hour. See the draft agenda and register below to secure your spot now for this pivotal event! See overview below.  \n\n \n \n\nAgenda\n \n\n \n \n\nRegister Today\n\n\n\n \n\nEvent Flyer\n\n\n\n \n\nSpeaker Bios\n\n \n\n\n \nOverview\nReview the latest advances in our understanding of cellular and molecular abnormalities in nephropathic cystinosis\, which have led to three major breakthroughs. We’ll explore the implementation of effective treatments for interrupting disease progression from childhood to adulthood\, and the exciting potential of cutting-edge gene therapies to eradicate this lifelong condition.\n \nDespite these promising developments\, substantial gaps and challenges persist in providing comprehensive care to cystinosis patients and families. Learn how earlier genetic recognition and timely diagnosis can make a difference. Find out how we’re bridging the gap to construct multidisciplinary healthcare teams extending from primary care to specialized support\, including social work\, nutritionists\, educators\, and quality of life navigators.\n \nBe a part of this transformative conference\, one of the first to address these glaring deficiencies in cystinosis care. Together\, we’ll focus on themes that apply to healthcare providers\, educators\, and families\, and work towards disseminating new information and raising awareness within the cystinosis community. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure.\n \n \nA special thank you to our sponsors: \n \n \n \n \n \n \n \n \n\n 
URL:https://cystinosis.org/event/cystinosis-symposium-a-rare-disease-model-for-comprehensive-care/
LOCATION:The New York Academy of Medicine\, 1216 5th Ave\, New York\, NY\, 10029\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240519T190000
DTEND;TZID=UTC:20240519T200000
DTSTAMP:20240515T204119Z
CREATED:20240515T204119Z
LAST-MODIFIED:20240515T204119Z
UID:4763-1716145200-1716148800@cystinosis.org
SUMMARY:Adult May Meetup - Mental Wellness
DESCRIPTION:May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD college professor).\n\n\n\nFor the Zoom link\, please register for free using this link.\nEvent is May 19 at 7p ET.\n\n\n\nWe hope to see you there!
URL:https://cystinosis.org/event/adult-may-meetup-mental-wellness/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240504T083000
DTEND;TZID=UTC:20240504T163000
DTSTAMP:20240428T164006Z
CREATED:20240206T161646Z
LAST-MODIFIED:20240428T164006Z
UID:4622-1714811400-1714840200@cystinosis.org
SUMMARY:Cystinosis Awareness Day - Family Meetup
DESCRIPTION:See you in Cincinnati\, Ohio! \nOn May 4th\, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection\, education\, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. \nDraft Agenda  \n\n8:30a Registration + breakfast provided \n9:00a Welcome \n9:30a Family introductions \n10:15a Dr Elizabeth Ames\, University of Michigan: Genetics in Cystinosis + Q&A \n11:15a Group photo \n11:30a Our Mental Health\, with Chelsea Meschke\, LMSW\n12:00p Lunch provided \n1:00p Updates from CRN President\, Jonathan Dicks \n1:30p Goose chase activity \n2:30p Patient Support session \n3:45p Closing remarks + departures \n\nIf you would like to stay at the venue overnight\, discounted rates are secured through this booking link.  \nWe hope to see you there! A special thank you our sponsors: \n \n                   
URL:https://cystinosis.org/event/cystinosis-awareness-day-family-meetup/
LOCATION:Cincinnati Marriott RiverCenter\, 10 W Rivercenter Blvd\, Covington\, Kentucky\, 41011\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240428T190000
DTEND;TZID=UTC:20240428T200000
DTSTAMP:20240417T132804Z
CREATED:20240320T175153Z
LAST-MODIFIED:20240417T132804Z
UID:4695-1714330800-1714334400@cystinosis.org
SUMMARY:Family Planning with Cystinosis
DESCRIPTION:  \nThe Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series. \nAre you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help answer some of your questions. Special guests include Briana Dundon\, Bryan and Alex Stout\, and Emily Mello. \nClick here to complete the simple event registration. Event will be held virtually on April 28th 6pm CT/ 7pm ET.  We hope to see you there! \n 
URL:https://cystinosis.org/event/family-planning-with-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240222T190000
DTEND;TZID=UTC:20240222T200000
DTSTAMP:20240221T143051Z
CREATED:20240129T142643Z
LAST-MODIFIED:20240221T143051Z
UID:4614-1708628400-1708632000@cystinosis.org
SUMMARY:Health Insurance - Online Q&A
DESCRIPTION:CRN’s Adult Leadership Advisory Board will host a Q&A with Levi Peterson and Samantha Saver of Patients Rising. Tap into their experience navigating health insurance during this live session. \nRegister to join the Zoom call on February 22 @ 7pm ET using this link. \n  \n 
URL:https://cystinosis.org/event/adult-leadership-meetup/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231029T203000
DTEND;TZID=UTC:20231029T213000
DTSTAMP:20231009T154754Z
CREATED:20231009T153826Z
LAST-MODIFIED:20231009T154754Z
UID:4555-1698611400-1698615000@cystinosis.org
SUMMARY:Halloween Trivia Night
DESCRIPTION:Test your knowledge of everything Halloween. \nALAB members are hosting a free\, online trivia night. \nOctober 29th at 8:30pm ET \nJump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults – use this link at the time of the event; no registration necessary. \nWe hope to see you there!
URL:https://cystinosis.org/event/halloween-trivia-night/
CATEGORIES:Gatherings/Conferences
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;TZID=UTC:20220709T160000
DTEND;TZID=UTC:20220709T170000
DTSTAMP:20220622T222003Z
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
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220707
DTEND;VALUE=DATE:20220711
DTSTAMP:20220802T183522Z
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;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:20220427T200000
DTEND;TZID=UTC:20220427T210000
DTSTAMP:20220420T231159Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220409T160000
DTEND;TZID=UTC:20220409T170000
DTSTAMP:20220322T145341Z
CREATED:20220310T200251Z
LAST-MODIFIED:20220322T145341Z
UID:3660-1649520000-1649523600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday\, April 9 at 4:00pm ET.  This event is open for all to attend.  \nWe hope to see you there!  \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-april-video-call-2/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211002T160000
DTEND;TZID=UTC:20211002T170000
DTSTAMP:20210930T181033Z
CREATED:20210930T154448Z
LAST-MODIFIED:20210930T181033Z
UID:3429-1633190400-1633194000@cystinosis.org
SUMMARY:Cystinosis Sessions: October Video Call
DESCRIPTION:Saturday\, October 2nd at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events\, travel and vacation tips\, staying safe curing COVID-19\, and whatever is on your mind. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \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-october-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: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:20210716T180000
DTEND;TZID=UTC:20210718T154500
DTSTAMP:20210804T181608Z
CREATED:20200415T003642Z
LAST-MODIFIED:20210804T181608Z
UID:2402-1626458400-1626623100@cystinosis.org
SUMMARY:2021 CRN Summer Online Conference
DESCRIPTION:Our biennial conference took place – virtually – July 16 – July 18\, 2021. \nWith the safety and health of our community in mind\, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational\, supportive\, engaging and fun experience. The beat goes on! \nThe conference is currently closed. However\, select sessions are available now on our YouTube channel and you can review the agenda here. \nOur original 2021 conference location of Nashville\, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.
URL:https://cystinosis.org/event/announcement-2021-family-conference/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2020/04/TheBeatGoesOn_Virtual.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210710T160000
DTEND;TZID=UTC:20210710T170000
DTSTAMP:20210709T131946Z
CREATED:20210709T131946Z
LAST-MODIFIED:20210709T131946Z
UID:3297-1625932800-1625936400@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. \nTOPICS  \nThe conversation topics include returning to the workplace after COVID-19 and 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-july-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:20210605T160000
DTEND;TZID=UTC:20210605T170000
DTSTAMP:20210604T204721Z
CREATED:20210604T204721Z
LAST-MODIFIED:20210604T204721Z
UID:3268-1622908800-1622912400@cystinosis.org
SUMMARY:Cystinosis Sessions: June Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. \nThe conversation is open to the entire cystinosis community. This month’s topic is stress. Let’s discuss what we do for relief and ideas that may help in the future. \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. \n  \n  \n 
URL:https://cystinosis.org/event/cystinosis-sessions-june-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;VALUE=DATE:20210430
DTEND;VALUE=DATE:20210605
DTSTAMP:20210505T151247Z
CREATED:20210505T151136Z
LAST-MODIFIED:20210505T151247Z
UID:3181-1619740800-1622851199@cystinosis.org
SUMMARY:CRN at 2021 Virtual PAS
DESCRIPTION:The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering\, delivered virtually in 2021\, offers opportunities for a global audience of physician-scientists\, clinicians\, and educators to share research\, explore new ideas\, build career opportunities\, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here. \nThanks to our cystinosis advocate volunteers\, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org
URL:https://cystinosis.org/event/crn-at-2021-virtual-pas/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210306T160000
DTEND;TZID=UTC:20210306T170000
DTSTAMP:20210223T234904Z
CREATED:20210223T234904Z
LAST-MODIFIED:20210223T234904Z
UID:3018-1615046400-1615050000@cystinosis.org
SUMMARY:Cystinosis Sessions: March Video Call
DESCRIPTION:All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday\, March 6th. \nThis “Cystinosis Session” will focus on the topic of relationships. \nJoin Zoom Meeting\nhttps://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. We hope to see you then!
URL:https://cystinosis.org/event/cystinosis-sessions-march-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:20210203T200000
DTEND;TZID=UTC:20210203T203000
DTSTAMP:20210209T180831Z
CREATED:20210112T212608Z
LAST-MODIFIED:20210209T180831Z
UID:2908-1612382400-1612384200@cystinosis.org
SUMMARY:Cystaran Town Hall: Product Shortage 2021 Expectations
DESCRIPTION:Leadiant Biosciences\, the distributor of CYSTARAN\, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed: \n\nCystaran shortage updates\nNext steps and what to anticipate\nImportant contact information\nQuestions from the community\n\nRegistration is open here until the event begins\, however\, questions for the Leadiant panel must be submitted by January 25th. \nUpdate: The CYSTARAN Town Hall recording is now available.
URL:https://cystinosis.org/event/cystaran-town-hall-product-shortage-2021-expectations/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2021/01/cystaran_townhall.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210102T160000
DTEND;TZID=UTC:20210102T173000
DTSTAMP:20201230T155550Z
CREATED:20201230T155550Z
LAST-MODIFIED:20201230T155550Z
UID:2897-1609603200-1609608600@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session will touch on the battles and victories associated with cystinosis. Everyone is welcome. \nTopics include but are not limited to: \n\nDifficulties coping during COVID and school\nTension between parents\, siblings and children\nALAB experiences with parental relationships\n\nJoin Zoom Meeting\nhttps://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. We hope to see you then! \n 
URL:https://cystinosis.org/event/cystinosis-sessions-january-video-call/
CATEGORIES:Gatherings/Conferences
END:VEVENT
END:VCALENDAR