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DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20201102
DTSTAMP:20260406T230553
CREATED:20201021T184456Z
LAST-MODIFIED:20201021T202417Z
UID:2705-1604188800-1604275199@cystinosis.org
SUMMARY:LLLFF Virtual 5K
DESCRIPTION:On the one year anniversary of Laura McGinnis’ passing\, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life in pursuit of adventure\, making memories every step of the way. We’d like to keep her spirit alive by fulfilling as many “fun” requests for the cystinosis community as possible. To grow our funding\, we are hosting a virtual 5k on November 1\, 2020.\n\nWe invite friends\, family\, and anyone who has been touched by her story and/or cystinosis to take part. It doesn’t matter if you walk\, jog\, stroll\, bike\, or scooter; let’s take this time to move our bodies and reflect.\n\nHosting a virtual 5k means you can participate from anywhere in the world! We’ve got in-person teams meeting on November 1st from Pennsylvania to Kauai. \n\n\n\nOnline registration is $25 per person. As a small token of gratitude\, you’ll receive a commemorative “Live Like Laura” ornament. For any questions\, contact Frankie McGinnis at frankiemcginnis@gmail.com.
URL:https://cystinosis.org/event/lllff-virtual-5k/
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20201101T110000
DTEND;TZID=America/Halifax:20201101T150000
DTSTAMP:20260406T230553
CREATED:20201007T164848Z
LAST-MODIFIED:20201021T172215Z
UID:2603-1604228400-1604242800@cystinosis.org
SUMMARY:Mulligans Fore Morgan
DESCRIPTION:Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday\, November 1st at 11:00 AM. \nRegistration is $75 per player for 3 hours of unlimited play. Each golf bay will hold teams of 6.  An “All-American” lunch is included. Guests will pay individually for alcoholic beverages. \n \n  \n2020 has brought Morgan Peachman a new kidney\, and a new lease on life. After turning 13 this summer\, and hitting her six month kidney-versary last month\, she’s been cleared for most normal activities. And she’ll be hitting the day’s ceremonial first tee shot! \nWhile nothing feels normal this year\, The Peachman Family is keeping with the theme of changing times by bringing their family’s annual fall fundraising event to TopGolf in Cleveland to ensure social distancing! \nWhether you’re an avid golfer\, playing for fun\, or have never hit a golf ball in your life\, our tournament style format will hit all the marks. Competitive\, lots of fun and in support of a good cause\, we hope you’ll join us November 1st! If you can’t attend\, donations are welcomed and sponsorship opportunities are available. Contact Jen Peachman at jennifer.peachman@gmail.com for details or register using the form below.
URL:https://cystinosis.org/event/morgan/
LOCATION:5820 Rockside Woods Blvd N\, 5820 Rockside Woods Blvd N\, Independence\, OH\, 44131\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/10/Mulligans-Fore-Morgan-Logo.png
ORGANIZER;CN="Jen Peachman":MAILTO:jennifer.peachman@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260406T230553
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:20210501
DTEND;VALUE=DATE:20210601
DTSTAMP:20260406T230553
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;VALUE=DATE:20210507
DTEND;VALUE=DATE:20210508
DTSTAMP:20260406T230553
CREATED:20210209T051945Z
LAST-MODIFIED:20210429T233752Z
UID:2957-1620345600-1620431999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 2021
DESCRIPTION:Welcome to the 4th Annual Cystinosis Awareness Day! \nStarted in 2018\, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. \nSince it’s inception\, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative. \nWe’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty! \nRaise Funds  \nYour donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction\, cognitive function\, measuring the effectiveness of cystine therapy\, and more. Visit our Grants Awarded page to learn more. \nFor the 4th Annual Cystinosis Awareness Day\, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20\, $57 becomes $228\, or $100 translates to $400. Donations will be matched up to $5\,700 (that’s $22\,800 for our community!) Click here to donate. \nShow your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here. \n \nRaise Awareness  \nLet’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered. \nMYTH: Cystinosis journeys are all the same. \nMYTH: A kidney transplant will cure cystinosis. \nMYTH: I am defined by my disease. \nIf you are ready to help this myth busting mission\, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page) \nThe Adult Leadership Advisory Board\, our umbrella group with a membership made entirely of adults living with cystinosis\, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com. \nThank you for continuing to fight for our cystinosis warriors\, this May 7th and every day! \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/CAD_2021.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210814T090000
DTEND;TZID=UTC:20210814T144500
DTSTAMP:20260406T230553
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;TZID=UTC:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260406T230553
CREATED:20220106T164011Z
LAST-MODIFIED:20220106T164011Z
UID:3533-1641657600-1641661200@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:Saturday\, January 8th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \nTo join\, click: https://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-january-video-call-2/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220116T130000
DTEND;TZID=UTC:20220116T180000
DTSTAMP:20260406T230553
CREATED:20220113T173052Z
LAST-MODIFIED:20220113T203131Z
UID:3560-1642338000-1642356000@cystinosis.org
SUMMARY:A Benefit for Elle
DESCRIPTION:Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family\, friends and community have supported her every step of the way. Her father is Jon Dicks\, President of the Cystinosis Research Network. You can read about the first few years of her journey as documented here in the Fall 2019 issue of The Cystinosis Advocate Newsletter. \nOn Sunday\, January 16th\, a local bar and restaurant will donate tips and a portion of sales to benefit Elle and her fight against cystinosis. If you are not in the Cincinnati area\, you can donate to the Cystinosis Research Network here. \nThank you for your support!
URL:https://cystinosis.org/event/a-benefit-for-elle/
LOCATION:The Hilltop\, 950 Pavillion Street\, Cincinnati\, OH\, 45202\, United States
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260406T230553
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;TZID=UTC:20220618T090000
DTEND;TZID=UTC:20220618T140000
DTSTAMP:20260406T230553
CREATED:20220311T004635Z
LAST-MODIFIED:20220315T194711Z
UID:3662-1655542800-1655560800@cystinosis.org
SUMMARY:2nd Annual SC Golf Fundraiser
DESCRIPTION:Gail Potts and her South Carolina team are back at it! \nAfter a successful inaugural event last summer\, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research\, family support and education for those impacted by cystinosis.    \nThis year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today. \nIf you can’t make it to Myrtle Beach\, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page. \nQuestions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.  \nCheck out this highlights reel from the 2021 golf outing on our YouTube channel. \nThank you for visiting!
URL:https://cystinosis.org/event/2nd-annual-south-carolina-golf-fundraiser/
LOCATION:Wild Wing Avocet Golf Course\, 1000 Wild Wing Boulevard\, Conway\, South Carolina\, 29526
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/03/Screen-Shot-2022-03-10-at-7.25.04-PM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260406T230553
CREATED:20221014T140812Z
LAST-MODIFIED:20230228T201058Z
UID:4057-1677542400-1677628799@cystinosis.org
SUMMARY:Rare Disease Day 2023
DESCRIPTION:February 28\, 2023 is Rare Disease Day.\nA movement created by Eurordis\, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2\,000 cystinosis warriors. \nHere are some resources and ways to participate in Rare Disease Day 2023: \nVirtual Meetings. Join the discussion\, “Intersections with Rare Diseases – A patient focused event” February 27\, 9:00 am – 4:45 pm ET. Rare Disease Week on Capitol Hill activities through EveryLife Foundation. In the UK: Improving Care Coordination for Rare on March 2\, 11:00 am – 13:00 pm GMT. \nShare your rare. Take a selfie using Rare Disease International’s virtual photo booth\, share your cystinosis story with us at info@cystinosis.org or visit rarediseaseday.org/share-your-story. Need inspiration? Read about Reza’s cystinosis story here. \nUse your voice. Provide feedback to the NORD/Rare Disease Diversity Coalition (RDDC) survey to be heard\, included\, and counted. This national survey of underrepresented rare disease patients will help us better advocate for equal access to care for all people living with rare diseases. \nLight Up for Rare by illuminating your home or a monument in your city. \nFind an event in your area via the Rare Action Network. \nRare Disease Basics. Learn and share the basics of your rare disease with this intro to cystinosis video and our Cystinosis 101 page. \nRare Equity Guide; How can we achieve equity for people living with a rare disease? Tune in to the Understanding the Emotional Health of Rare Disease Patients session from Global Genes. \nResearch Participation. This cystinosis study can be completed from home. Have questions? Join this live Q&A event with researchers. \nGuides for Rare Adults. Download the Rare Disease Employment Toolkit and Living rare: Family Planning Toolkit. \nRare Programming. Take advantage of the special programming offered by your patient advocacy organization. \nSelf care. It can be easy for rare patients and caregivers to over look their mental health. If you are in crisis\, please reach out. \nMake a donation. Donate time by volunteering with the CRN [info@cystinosis.org] or support our mission with a monetary contribution.
URL:https://cystinosis.org/event/rare-disease-day-2023/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/10/RDD_final.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230309T100000
DTEND;TZID=America/New_York:20230309T110000
DTSTAMP:20260406T230553
CREATED:20230228T192801Z
LAST-MODIFIED:20230228T192801Z
UID:4323-1678356000-1678359600@cystinosis.org
SUMMARY:Informational Q&A: Cystinosis QoL Study
DESCRIPTION:We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US” \nThe research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. \nMarch 9\, 2023  \n10:00 – 11:00 am Eastern \nJoin the Zoom meeting using this link  \nIn partnership with the Department of Medical Psychology at Germany’s University Medical Center in Hamburg-Eppendorf\, Dr. Julia Quitmann and team are actively recruiting participants for online interviews. The study focuses on health-related quality of life (HrQoL) and aims to learn more about the challenges and management of the disease and the needs of patients living with cystinosis. \nBoth cystinosis patients and parents may be eligible. Additional information is available here or contact Isabell Suck or Stefanie Witt at quality-of-life@uke.de.
URL:https://cystinosis.org/event/informational-qa-cystinosis-qol-study/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260406T230553
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:20260406T230553
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:20260406T230553
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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