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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:20220101T000000
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DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260411T033940
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;VALUE=DATE:20240229
DTEND;VALUE=DATE:20240301
DTSTAMP:20260411T033940
CREATED:20230919T145420Z
LAST-MODIFIED:20240208T215903Z
UID:4546-1709164800-1709251199@cystinosis.org
SUMMARY:Rare Disease Day 2024
DESCRIPTION:By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way\, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved: \n\nShare your story with the official Rare Disease Day sponosors here\nSign up for Rare Disease Week on Capitol Hill in Washington\, DC. Virtual sessions are also available\nTalk with a friend\, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children\nGet social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness\nJoin the Rare Action Network\, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)\nShow support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here\nParticipate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers\n\n 
URL:https://cystinosis.org/event/rare-disease-day-2024/
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240507
DTEND;VALUE=DATE:20240508
DTSTAMP:20260411T033940
CREATED:20230919T145719Z
LAST-MODIFIED:20240420T023808Z
UID:4548-1715040000-1715126399@cystinosis.org
SUMMARY:Cystinosis Awareness Day
DESCRIPTION:Join us on and leading up to May 7th to promote cystinosis awareness\, education and fundraising efforts. \nOur 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share\, create and/or donate. \n\nShare. \n\n\nEach day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing examples from global cystinosis warriors calling out those stereotypes through videos\, photos and personal perspectives. Please share to help shatter #CystinosisStereotypes \n\n\nCreate.  \n\n\nMake your own video/post in response to the questions: What cystinosis stereotype are you breaking? Which do you wish to break? Once created\, share with your network with #CystinosisStereotypes \n\n\nDonate.  \n\n\nYour Cystinosis Awareness Day donations will be TRIPLED. $10 turns into $30\, $100 into $300\, and so on. Support cystinosis research\, family assistance and educational programming today! The match will be capped at $15\,000. \n\nYou may also be interested in: \n\nCincinnati\, OH Family Meetup There will be an in person event for those regional to Cincinnati\, Ohio on May 4th. Registration is complimentary and you can learn more here\nFor Your Healthcare Team The CRN is hosting an event at The New York Academy of Medicine to discuss comprehensive care in cystinosis. The May 31st symposium is for healthcare professionals. Please share the link with your care teams – they don’t want to miss this information-packed agenda\nSpecial Programs Check out our robust support programming which includes the Cystinosis Warrior Impact Program. Apply yourself or nominate a loved one living with cystinosis\nAdult Leadership Advisory Board Open to adults living with cystinosis 18+ years old\, see the group’s current initiatives and apply to be a member here\nVolunteer for Research Be a part of important advancements in the world of cystinosis. We are currently recruiting for the Quality of Life study and the full list is available on our webpage\n\nThank you to our sponsors: \n \n \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2/
CATEGORIES:Fundraising Events
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