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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;VALUE=DATE:20240507
DTEND;VALUE=DATE:20240508
DTSTAMP:20240420T023808Z
CREATED:20230919T145719Z
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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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20210218T035719Z
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
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