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X-WR-CALDESC:Events for Cystinosis Research Network
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20260506T220048
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20260506T220048
CREATED:20191120T162128Z
LAST-MODIFIED:20191222T124032Z
UID:2254-1575331200-1575417599@cystinosis.org
SUMMARY:Giving Tuesday
DESCRIPTION:The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This is our fifth year celebrating the event that has inspired millions to give\, collaborate\, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in response to the shopping frenzy surrounding Black Friday and Cyber Monday. \nHere’s a glimpse of the overall impact from 2018’s Giving Tuesday: \n\n150+ countries participated\n110+ community coalitions involved\n$440M+ dollars raised online\n\nGiving Tuesday – December 3rd\, 2019 \n#GreatGivers Campaign \nThis year we’ve asked community members to reflect on those who’ve helped along the cystinosis journey. Leading up to Giving Tuesday\, we are sharing some of those experiences to recognize the sacrifice\, generosity\, and selflessness many of us have been fortunate to benefit from. A nod to those #GreatGivers. Click on their stories below. \n\nAna\nCheryl\nGail\nIna\nJana\nJenn\nSara\nSteve\n\nWays to Help  \nYour online donation will benefit our cystinosis community as we continue to provide grassroots research\, meaningful support and educational programs. However\, there are many ways to “give” beyond monetary donations. Visit our How to Help page. \nUPDATE: Our #GreatGivers campaign surpassed an online fundraising goal of $5\,000! \nA special thank you to each person who has supported the CRN in our quest for improved treatments and ultimately\, a cure for cystinosis. \nHappy Holidays!
URL:https://cystinosis.org/event/giving-tuesday/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/11/GivingTues2019.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20200502T160000
DTEND;TZID=America/New_York:20200502T173000
DTSTAMP:20260506T220048
CREATED:20200414T234814Z
LAST-MODIFIED:20200414T235101Z
UID:2399-1588435200-1588440600@cystinosis.org
SUMMARY:Live Video Conference: Dependence\, Education & Employment
DESCRIPTION:Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET\, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on: \n\nEducation\nEmployment\nImportance of Being Self-Reliant vs Being Dependent\nEssential Needs & Medication\nGeneral conversation as time allows\n\nTo join the meeting: \nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nDownloading Zoom/Video Conference Preparation \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.
URL:https://cystinosis.org/event/live-video-conference-dependence-education-employment/
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:20200606T120000
DTEND;TZID=UTC:20200606T133000
DTSTAMP:20260506T220048
CREATED:20200521T050942Z
LAST-MODIFIED:20200521T051344Z
UID:2430-1591444800-1591450200@cystinosis.org
SUMMARY:Cystinosis Sessions: Overcoming Limitations & Goal Setting
DESCRIPTION:The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include: \n\nFacing challenges\nPeer pressure\nLimitations & how to overcome them\nGoal setting\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nAdd the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th!
URL:https://cystinosis.org/event/cystinosis-sessions-overcoming-limitations-goal-setting/
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:20200801T120000
DTEND;TZID=UTC:20200801T133000
DTSTAMP:20260506T220048
CREATED:20200729T053416Z
LAST-MODIFIED:20200729T053416Z
UID:2490-1596283200-1596288600@cystinosis.org
SUMMARY:Cystinosis Sessions: Exercise
DESCRIPTION:The Cystinosis Sessions live video series continues on Saturday\, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members. \nCystinosis Sessions: Exercise \n\nImportance of exercise\nTypes of exercise\n\nStrength training\nAerobics\nStretching\nBalance training\nModerate vs Intense exercise\n\n\nAnd more\n\nPlease download the Zoom app prior to the meeting. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786\nClick on the above and have the Meeting ID ready\, if you use the link provided\, the meeting ID is not needed.
URL:https://cystinosis.org/event/cystinosis-sessions-exercise/
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:20200929T190000
DTEND;TZID=UTC:20200929T203000
DTSTAMP:20260506T220048
CREATED:20200917T152803Z
LAST-MODIFIED:20200917T153022Z
UID:2573-1601406000-1601411400@cystinosis.org
SUMMARY:Cystinosis Basics: Virtual Meetups
DESCRIPTION:Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum\, Emory School of Medicine is our expert speaker. Join us by registering today at https://us02web.zoom.us/webinar/register/WN_HU0G6SQuR4W_G8mmFr3bog.\n\nFREE welcome kits – limited availability.\nWe hope you can join us!
URL:https://cystinosis.org/event/cystinosis-basics-virtual-meetups/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/CystinosisBasics.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201003T120000
DTEND;TZID=UTC:20201003T133000
DTSTAMP:20260506T220048
CREATED:20201001T143243Z
LAST-MODIFIED:20201001T143243Z
UID:2601-1601726400-1601731800@cystinosis.org
SUMMARY:Cystinosis Sessions: Alternative Therapies\, Exercise & Activities
DESCRIPTION:Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday\, October 3 at 12:00 pm ET. This open discussion will include alternative therapies\, exercise and activities. \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.
URL:https://cystinosis.org/event/cystinosis-sessions-alternative-therapies-exercise-activities/
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:20201006T190000
DTEND;TZID=UTC:20201006T203000
DTSTAMP:20260506T220048
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20260506T220048
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:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260506T220048
CREATED:20210209T045540Z
LAST-MODIFIED:20210218T035719Z
UID:2950-1614470400-1614556799@cystinosis.org
SUMMARY:Rare Disease Day 2021
DESCRIPTION:The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. \nThis theme is our call to action. Let’s elevate our voices as a united rare disease community.\nLeading up to Rare Disease Day on February 28th\, we invite each person impacted by rare disease to share their #RareIn60. \nCreate a 60-second video\,\n60-second photo collage or\n60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life. \nYour message can be geared towards friends and family\, colleagues\, students\, health care professionals\, etc. \nTo participate: \n– Create your #RareIn60\n– Post online the week of February 22 (and/or send directly to cjohnstone@cystinosis.org)\n– Use #RareIn60\n– Let us know you’ve joined the campaign! \nRare Disease Day Raffle \nThe Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!
URL:https://cystinosis.org/event/rare-disease-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/Twitter-Banner-1500x500-1.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260506T220048
CREATED:20220128T232845Z
LAST-MODIFIED:20220228T051018Z
UID:3588-1646006400-1646092799@cystinosis.org
SUMMARY:Rare Disease Day 2022
DESCRIPTION:February 28th marks the 12th annual Rare Disease Day (RDD). \nObserved on the rarest day of the year\, the global event campaigns for equity for the over 7\,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic\, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure\, leading to kidney failure\, muscle wasting\, swallowing difficulty\, diabetes\, photophobia\, and more. Our cystinosis community is known to have a population of 2\,000 worldwide with 600 residing in the U.S. \nIf you are ready to take action\, here are a few ways we can work together make a better world for those living with a rare disease. Thank you for visiting! \n– Virtual events: \n\nRare Disease Day: A Global Priority for Equity (Eurordis) and Demystifying the methodology to determine market value when remunerating the patient community for interactions with the pharmaceutical industry.\nRare Disease Week on Capitol Hill via the EveryLife Foundation.\nRare Disease Day with the NIH (National Institutes of Health).\nRare Disease Day with NORD.\nQuinnipiac RDD Symposium featuring CRN President Jonathan Dicks. Register here for the in-person or virtual option to where patients\, family members\, and researchers will discuss their stories and promote education\, awareness\, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians.\nRare Disease Day Patient Panel with Wego Health. Join rare disease patient leaders to discuss resiliency\, self care\, story sharing\, and raising awareness to support the rare community.\nRare Disease Day Webinar on Feb 24 with the Canadian Organization for Rare Disorders. Bringing Canada’s Rare Disease Drug Strategy from Vision to Reality.\nThe Rare Disease Diversity Coalition and Black Women’s Health initiative is Feb 28 at 12pm ET. Discuss issues facing Black\, Indigenous and People-of-Color (BIPOC) living with a rare disease https://bit.ly/3HDWVyF. \n\n– The AllStripes cystinosis research program is here and we are proud to be a partner. We are looking for families impacted by cystinosis who want to advance cystinosis research from home. You can learn more here: allstripes.com/cystinosis. \n– Share information about rare disease within your networks and social media. For example: Join the Global Genes challenge by posting a photo/video wearing denim with #ShowYourGenes. \n– Light Up for Rare through rarediseaseday.org. \n– School Toolkit. The kit may help you have discussions with teachers or young children about rare disease. \n– Equity Toolkit. Rarediseaseday.org has featured tools to assist people living with a rare disease improve social opportunity\, non-discrimination in education and work\, and equitable access to health\, social care\, diagnosis and treatment. \n– Donate. You can contribute towards the research\, education and support efforts of the CRN by clicking here. \n– View the video message from the Adult Leadership Advisory Board; start watching here.
URL:https://cystinosis.org/event/rare-disease-day-2022/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/01/RDD_Support-Pledge-Strapline-1920x1080_ENGLISH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260506T220048
CREATED:20221014T141524Z
LAST-MODIFIED:20230504T191129Z
UID:4060-1683417600-1683503999@cystinosis.org
SUMMARY:Cystinosis Awareness Day
DESCRIPTION:On May 7\, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it’s sixth year\, CAD is a global effort to raise funds and educate the general population about this disease. This year’s campaign will include testimonials from cystinosis warriors\, caregivers/family members and international cystinosis organizations. In addition\, we will feature physicians and rare partner organizations who’ve teamed up to amplify our message. \nHow will you spread the word? Here are some ideas to get you started: \n\n“One Thing” Campaign. Share the one thing you wish everyone knew about cystinosis\nNominate yourself or a fellow cystinosis warrior for the Cystinosis Warrior Impact Program\nShare your cystinosis odyssey or pass along information from our website\nVolunteer for cystinosis research studies\nStart a cystinosis fundraiser. Facebook and Instagram make this easy or contact Jonathan Dicks on how to host an event (jdicks@cystinosis.org)\nVisit our general list on How to Help\nTo donate\, click here\n\nIf you would like to volunteer to become and event ambassador\, please email info@cystinosis.org.
URL:https://cystinosis.org/event/cystinosis-awareness-day/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240222T190000
DTEND;TZID=UTC:20240222T200000
DTSTAMP:20260506T220048
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:20240428T190000
DTEND;TZID=UTC:20240428T200000
DTSTAMP:20260506T220048
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:20240504T083000
DTEND;TZID=UTC:20240504T163000
DTSTAMP:20260506T220048
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:20240519T190000
DTEND;TZID=UTC:20240519T200000
DTSTAMP:20260506T220048
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:20240531T074500
DTEND;TZID=UTC:20240531T191500
DTSTAMP:20260506T220048
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:20240729T150000
DTEND;TZID=UTC:20240729T160000
DTSTAMP:20260506T220048
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:20250711
DTEND;VALUE=DATE:20250714
DTSTAMP:20260506T220048
CREATED:20240809T151343Z
LAST-MODIFIED:20240809T151537Z
UID:4783-1752192000-1752451199@cystinosis.org
SUMMARY:2025 CRN Family Conference
DESCRIPTION:
URL:https://cystinosis.org/event/2025-crn-family-conference/
LOCATION:Amway Grand\, 187 Monroe Ave NW\, Grand Rapids\, 49503\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250916T193000
DTEND;TZID=UTC:20250916T203000
DTSTAMP:20260506T220048
CREATED:20250908T163222Z
LAST-MODIFIED:20250908T163222Z
UID:5073-1758051000-1758054600@cystinosis.org
SUMMARY:Zoom Night - September
DESCRIPTION:We’re keeping it simple with no agenda\, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nSeptember 16\n 7:30p ET\nZoom https://tinyurl.com/yy3v7euh\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-september/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260310T190000
DTEND;TZID=UTC:20260310T200000
DTSTAMP:20260506T220048
CREATED:20260116T171637Z
LAST-MODIFIED:20260116T172757Z
UID:5122-1773169200-1773172800@cystinosis.org
SUMMARY:Zoom Night - March
DESCRIPTION:Join us for our March Zoom call\, where we’ll be coming together to talk about kidney transplants. \nFor many in the cystinosis community\, the journey includes at least one (if not multiple) kidney transplants. This open\, supportive conversation will explore life before transplant\, dialysis\, re-transplantation\, and the realities in between. \nWith voices from across the community\, this call offers a chance to learn from one another\, ask questions\, and feel more prepared for what may lie ahead no matter where you are today. \n\nTuesday March 10\n7:00 pm et / 6:00 pm ct / 5:00 pm mt / 4:00 pm pt\nZoom meeting link: https://us06web.zoom.us/j/88412838095\n\nCRN VP of Family Support\, Chelsea Meschke will lead the event. Chelsea’s professional background is in social work and she is the caregiver of two young boys with cystinosis. \n 
URL:https://cystinosis.org/event/zoom-night-march/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2026/01/transplant3.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
END:VCALENDAR