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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260405T012217
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
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;TZID=UTC:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20260405T012217
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20260405T012217
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20260405T012217
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
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