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DTSTART;TZID=UTC:20190504T120000
DTEND;TZID=UTC:20190505T120000
DTSTAMP:20190503T184057Z
CREATED:20190417T185926Z
LAST-MODIFIED:20190503T184057Z
UID:1532-1556971200-1557057600@cystinosis.org
SUMMARY:2nd Annual 57 Miles for Cystinosis
DESCRIPTION:
URL:https://cystinosis.org/event/57-miles/
LOCATION:Sussex Central High School\, 26026 Patriots Way\, Georgetown\, DE\, 19947\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/04/57miles_Website.png
ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191105
DTEND;VALUE=DATE:20191111
DTSTAMP:20190910T194605Z
CREATED:20190910T194605Z
LAST-MODIFIED:20190910T194605Z
UID:1688-1572912000-1573430399@cystinosis.org
SUMMARY:American Society of Nephrology – Kidney Week
DESCRIPTION:CRN will join the American Society for Nephrology (ASN) and more than 13\,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington\, DC. The world’s premier nephrology meeting\, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge\, learn the latest scientific and medical advances\, and listen to engaging and provocative discussions with leading experts in the field.
URL:https://cystinosis.org/event/american-society-of-nephrology-kidney-week/
LOCATION:Walter E. Washington Convention Center\, Washington\, DC\, USA\, 801 Mt Vernon Pl NW\, Washington\, 20001\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20191222T124032Z
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:20200425T070000
DTEND;TZID=America/New_York:20200425T150000
DTSTAMP:20200408T044503Z
CREATED:20190910T193640Z
LAST-MODIFIED:20200408T044503Z
UID:1685-1587798000-1587826800@cystinosis.org
SUMMARY:Virtual: Cystinosis Network Europe 2020 International Conference
DESCRIPTION:Following much consideration\, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19. \nThe International Cystinosis Family Conference is now taking place online! \nOn April 25th from 7am to 3pm ET you will have access to this free event. Available in you own home anywhere in the world\, you can now watch cystinosis world experts (with translation) presenting the latest information on managing cystinosis; educational issues; bones and muscles; eyes and possible new treatments; kidneys – pre and post transplant and keeping well; the latest research in gene therapy and other new treatments; pregnancy and male fertility; the impact of COVID-19; and maintaining your mental health. \nConfirmed speakers include Prof Elena Levtchenko (Chair)\, Prof Atif Awan\, Dr Rachel Bishop\, Prof Don Cairns\, Dr Anuj Chauhan\, Dr Stephanie Cherqui\, Prof Paul Goodyer\, Prof Paul Grimm\, Dr Patrick Harrison\, Prof Craig Langman\, Dr Herbie Newell\, Dr Joyce Senior\, and more. \nRegister Now. To secure your place and notify the group of translation preferences. \nAbout CNE \nCystinosis Network Europe (CNE) which comprises members from patient organizations across Europe and further afield. Eight European organisations come together to support people with cystinosis and promote research and form a network. We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis\, with the support of EURORDIS.
URL:https://cystinosis.org/event/cystinosis-network-europe-2020-international-conference/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/09/CNE.jpg
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20200504T182950Z
CREATED:20191130T062559Z
LAST-MODIFIED:20200504T182950Z
UID:2313-1588809600-1588895999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 3rd Annual
DESCRIPTION:Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation\, the 57-kb deletion. This marks the third year we’ve come together on this day to support education\, awareness\, research\, and fundraising for our rare disease. \nMonths of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training\, sponsors\, team coordination\, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions\, this year’s events have been canceled\, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever. \nIt’s like our CRN President says\, “Cystinosis doesn’t stop. Until there is a cure\, neither will we.” \nCystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day\, not for one hour\, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us. \nHere are a few ways to help us in this fight: \n\nLike & share our awareness video\nUpdate your Facebook profile frame\nShare your cystinosis experience with a friend\, neighbor\, or colleague (in compliance with your local COVID-19 guidelines)\nRead inspiring cystinosis stories\nDonate\nStart a fundraiser by emailing info@cystinosis.org\n\nIf you’d like to learn more about cystinosis resources and research\, click here. We are proud to be one of the only organizations to provide comprehensive support\, education\, awareness\, and research relevant to each point in the cystinosis journey. \nThank you!
URL:https://cystinosis.org/event/cystinosis-awareness-day-3rd-annual/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200919T170000
DTEND;TZID=UTC:20200919T183000
DTSTAMP:20200917T152146Z
CREATED:20200917T152146Z
LAST-MODIFIED:20200917T152146Z
UID:2570-1600534800-1600540200@cystinosis.org
SUMMARY:Caregivers Connect: Virtual Meetup
DESCRIPTION:Caregivers of children with cystinosis under 18 years old are invited.\nJoin us for a video conference to connect with other caregivers. This is a free networking opportunity. Register at https://us02web.zoom.us/meeting/register/tZUpde2tqj8uH9yGl5nmGG6v1TvprXaLgtOV.\n\nFREE welcome kits – limited availability.\nWe hope to see you there!
URL:https://cystinosis.org/event/caregivers-connect-virtual-meetup/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/Caregivers_18condensed.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210501
DTEND;VALUE=DATE:20210601
DTSTAMP:20210402T011222Z
CREATED:20191106T170131Z
LAST-MODIFIED:20210402T011222Z
UID:2174-1619827200-1622505599@cystinosis.org
SUMMARY:Miles for Moose 5.7 Mile Virtual Walk/Run
DESCRIPTION:
URL:https://cystinosis.org/event/miles-for-moose/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/11/Header4b.png
ORGANIZER;CN="Andrea Carr":MAILTO:milesformoose57@gmail.com
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:20210814T090000
DTEND;TZID=UTC:20210814T144500
DTSTAMP:20210722T170215Z
CREATED:20210224T001230Z
LAST-MODIFIED:20210722T170215Z
UID:3021-1628931600-1628952300@cystinosis.org
SUMMARY:CRN Golf Tournament: Myrtle Beach
DESCRIPTION:The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday\, August 14th. Click here to register today or make a donation through this website.
URL:https://cystinosis.org/event/crn-golf-tournament-myrtle-beach/
LOCATION:Myrtle Beach National Golf Club\, 4900 National Drive\, Myrtle Beach\, SC\, 29779\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/07/Screen-Shot-2021-07-22-at-1.00.08-PM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20220228T051018Z
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: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;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: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;VALUE=DATE:20250711
DTEND;VALUE=DATE:20250714
DTSTAMP:20240809T151537Z
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
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