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DTSTART;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260509T181643
CREATED:20250904T143805Z
LAST-MODIFIED:20260429T164433Z
UID:5071-1778112000-1778198399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2026
DESCRIPTION:This year marks the 9th Annual Cystinosis Awareness Day. \nInspired by the 57kb deletion in the CTNS gene\, the most common cause of nephropathic cystinosis\, the day has grown into a global moment of recognition\, awareness\, and action. \nJoin us in answering…\nWhat’s your 57? \nWays  to participate: \n57 voices\nWhat’s your 57? The reason that keeps you going. The moment that shaped you. The “why” behind your connection to the cystinosis community. We’re inviting 57 people from around the world to be featured in the awareness campaign. Amplify your voice here. \nShow your 57\nChange your social media profile image(s) to support Cystinosis Awareness Day. Download it here. \nGet creative\nTurn your “57” into a work of art; music\, drawing\, painting\, photography\, dance\, theater\, or crocheting\, writing etc. \nGive back\nAsk 57 friends and family members to donate to the CRN using our secure\, tax-deductible form. \nExplain it\nCreate a short\, simplistic explanation of cystinosis to bring up in conversation. Or you could text\, email or call 5-7 people to talk about why awareness day is important to you. \nReflect\nJournal your journey. Write 57 words about your relationship with cystinosis\, or keep it simple and jot down how you are feeling today (share or keep it to yourself). \nStay informed\nSpend 57 minutes reading the latest on cystinosis. Share one takeaway. \nActs of kindness\nComplete 5-7 small acts. Every action makes a difference! \nConnect\nLocated near Jacksonville\, Florida? Join us in-person on May 2 to celebrate the day with our cystinosis families. \nSimple actions can help others better understand this disease\, drive earlier diagnosis and better care\, generate stronger support\, all in hopes of improving longterm outcomes. How will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media. \nWe look forward to see how you choose to honor our 2\,000+ warriors this Cystinosis Awareness Day. \nAssets ready to download \n\nCystinosis Awareness Day flyer\nSocial media profile image
URL:https://cystinosis.org/event/cystinosis-awareness-day-2026/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260502T083000
DTEND;TZID=UTC:20260502T170000
DTSTAMP:20260509T181643
CREATED:20260219T190847Z
LAST-MODIFIED:20260408T142942Z
UID:5138-1777710600-1777741200@cystinosis.org
SUMMARY:2026 CRN Regional Family Meetup
DESCRIPTION:Family and friends within driving distance of Jacksonville\, Florida\, do not want to miss this event! \nOpen to those living with cystinosis and their loved ones\, the 2026 CRN Regional Family Meetup is an intimate gathering designed to connect\, inform and strengthen our cystinosis community. Hosted by Chelsea Meschke\, LMSW\, CRN VP of Family Support and proud mom of two cystinosis warriors\, this special event creates space for meaningful conversation and cystinosis learning. \nDuring this one day event\, we will celebrate Cystinosis Awareness Day together. We are honored to welcome guest speaker Dr. Larry Greenbaum\, MD\, PhD. Dr. Greenbaum is a prominent pediatric nephrologist and Division Director at Emory University/Children’s Health of Atlanta. He is the Principal Investigator for the Emory site of the Cohort 0 clinical trial for CYStem gene therapy. \nRegistration covers:\n– Admission for up to 4 people\n– Free hotel parking\n– Breakfast\, lunch\, snacks and beverages during the Sat\, May 2 event\n– Post-event mileage reimbursement from your home to the hotel (up to 150 miles roundtrip)\n– Complimentary hotel stay on Fri\, May 1st at the Hyatt Place Jacksonville/St. Johns Town Center (meetup begins Saturday morning). When you select the complimentary hotel stay\, CRN will handle your reservation. Rooms default to a standard king bed with a sleeper sofa. \nTo attend\, all (including children) need to be registered by April 7th\, 2026. \nFor questions\, email chelseam@cystinosis.org. See you in Jacksonville this May! \nRegistration is now closed. Thank you for your interest. Check our Awareness Day event for other ways to take part from home.
URL:https://cystinosis.org/event/2026-crn-regional-family-meetup/
LOCATION:Hyatt Place St Johns Town Center\, 4742 Town Center Parkway\, Jacksonville\, FL\, 32246\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260509T181643
CREATED:20250904T142601Z
LAST-MODIFIED:20260228T140045Z
UID:5069-1772236800-1772323199@cystinosis.org
SUMMARY:Rare Disease Day 2026
DESCRIPTION:Taking place on the last day of February\, Rare Disease Day is a global movement which aims to promote equity in social opportunities\, healthcare\, and access to diagnosis and therapies for individuals living with rare diseases. \nIf you are looking for cystinosis awareness opportunities\, you’ve come to the right place. Here are some ideas: \n\nShare Your Story\n\nThrough partnership with Everylife Foundation\, share your experience focusing on this question: How has rare disease has affected your and your family’s lives? Submit online here. \n\nFaces of Rare\n\nSimilar to the option above\, join NORD in celebrating the “Faces of Rare.” Providing a photo and a small glimpse into your rare disease story on their website. \n\nRare Disease Week in Washington\, D.C. \n\nAdvocate during Rare Disease Week on Capitol Hill (email info@cystinosis.org if interested in sponsorship) \n\nLocal Rare Disease Day Events\n\nCan’t make it to Washington\, D.C.? Do a quick search for Rare Disease Day events near you. Check out NORD’s list here. \n\nCall for Rare Youth Leaders\n\nTeens and young adults looking to take a rare leadership role\, contact the CRN before March 8th. Opportunities open to those with a personal connection to rare ages 18-30. Email info@cystinosis.org \n\nWhy should I care about Rare Disease Day?\n\nLearn about Rare Disease Day and sharing the importance of this event with friends\, family and your extended networks. Access the official Rare Disease Day info pack and video today
URL:https://cystinosis.org/event/rare-disease-day-2026/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250916T193000
DTEND;TZID=UTC:20250916T203000
DTSTAMP:20260509T181643
CREATED:20250908T163222Z
LAST-MODIFIED:20250908T163222Z
UID:5073-1758051000-1758054600@cystinosis.org
SUMMARY:Zoom Night - September
DESCRIPTION:We’re keeping it simple with no agenda\, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nSeptember 16\n 7:30p ET\nZoom https://tinyurl.com/yy3v7euh\n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-september/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250711
DTEND;VALUE=DATE:20250714
DTSTAMP:20260509T181643
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250507
DTEND;VALUE=DATE:20250508
DTSTAMP:20260509T181643
CREATED:20250317T152951Z
LAST-MODIFIED:20250505T211333Z
UID:4958-1746576000-1746662399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2025
DESCRIPTION:Now in it’s eighth year\, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? \nThere are many ways to show your support. \n\nBe Seen\, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further\, share a fact about cystinosis or share something you wish others knew\n\nAsk Me Anything (AMA). AMA is a powerful way to raise awareness by connecting\, sharing\, and engaging by openly answering questions about a topic\, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers\, email info@cystinosis.org or comment on our socials\n\nDouble Your Donation Days. From May 1–15\, 2025\, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today\nVisit our How to Help page for more\n\n 
URL:https://cystinosis.org/event/8th-annual-cystinosis-awareness-day/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260509T181643
CREATED:20250205T165010Z
LAST-MODIFIED:20250311T192303Z
UID:4868-1740700800-1740787199@cystinosis.org
SUMMARY:Rare Disease Day 2025
DESCRIPTION:Rare Disease Day is February 28\, 2025. \nIt is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease\, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here. \nThe 2025 theme: More than you can image.  \nWe are asking the cystinosis community to raise your voice and provide a glimpse into what life is like living with a rare disease. Our goal is to fill in the blank below and share with the broader community via social media and/or the CRN newsletter. \n\nLiving with cystinosis is more ___________ than you can imagine. \nSend in your answer along with a photo or create a video expressing your thoughts. Email to info@cystinosis.org.\n\n\nOther ways to be a part of Rare Disease Day 2025 \n\n\n\nUS Residents – EveryLife Foundation for Rare Diseases created a petition to support steady and robust federal agency leadership\, federal biomedical research funding\, and public health agency support.\n\nIf this cause resonates with you\, lend your voice by signing and sharing here.\n\n\nOn February 28\, landmarks around the world will light up in Rare Disease Day colors. If you can\, visit a lit-up landmark near you and take a photo! No landmark nearby? Light up your home with Rare Disease Day colors—purple\, pink\, green\, and blue—and share a photo.\nShare a Fact About Cystinosis. Raise awareness by posting a fact about cystinosis on social media or have a discussion within your circle of family\, friends\, schools\, places of worship\, etc. Not sure what to share? Visit our education section.\nConnect and Advocate. Share your experience with cystinosis in an email\, blog\, or social post. Tag your representatives and ask them to support rare disease research and policies.\nGet Creative. Write a poem\, draw a picture\, or create something that represents your cystinosis journey. Share it or send to us to showcase.\n\n\n\nNo matter how you choose to participate\, your voice makes a difference!
URL:https://cystinosis.org/event/rare-disease-day-2025/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2025/02/FINAL_RDD-2025_Pledge-Card_portrait_English.zip.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250211T183000
DTEND;TZID=UTC:20250211T193000
DTSTAMP:20260509T181643
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/
LOCATION:https://cystinosis.org/event/family-zoom-night/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240826T180000
DTEND;TZID=UTC:20240826T190000
DTSTAMP:20260509T181643
CREATED:20240819T210516Z
LAST-MODIFIED:20240819T210516Z
UID:4788-1724695200-1724698800@cystinosis.org
SUMMARY:Adults August Meetup
DESCRIPTION:The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma. \nSpecial guest is Kerry Heckman\, a licensed therapist from Seattle\, Washington. Register here to take part in the discussion.
URL:https://cystinosis.org/event/adults-august-meetup/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240722T190000
DTEND;TZID=America/New_York:20240722T203000
DTSTAMP:20260509T181643
CREATED:20240722T134334Z
LAST-MODIFIED:20240722T134426Z
UID:4776-1721674800-1721680200@cystinosis.org
SUMMARY:School Prep + Cystinosis (virtual)
DESCRIPTION:A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom\, this meeting is for you!\nJoin the Zoom call Monday\, July 22 at 7pm ET.We will discuss– Individual Education Plans (IEPs) – 504 plans – Medication schedules– Overall support strategies …and more\n\nNo registration needed. Use this link when it is time for the meeting.\nWe hope to see you Monday night for an engaging conversation.
URL:https://cystinosis.org/event/school-prep-cystinosis-virtual/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240507
DTEND;VALUE=DATE:20240508
DTSTAMP:20260509T181643
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/
LOCATION:NC
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240504T083000
DTEND;TZID=UTC:20240504T163000
DTSTAMP:20260509T181643
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;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20260509T181643
CREATED:20220810T155023Z
LAST-MODIFIED:20230227T222541Z
UID:3938-1689206400-1689465599@cystinosis.org
SUMMARY:2023 Family Conference - Nashville
DESCRIPTION:The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville\, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. \nFor agenda\, travel scholarships and more details\, click here. \nWe look forward to seeing you there!
URL:https://cystinosis.org/event/2023-family-conference-dates-location/
LOCATION:Nashville Marriott at Vanderbilt University\, 2555 West End Avenue\, Nashville\, TN\, 37203\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260509T181643
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/
LOCATION:NC
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220618T090000
DTEND;TZID=UTC:20220618T140000
DTSTAMP:20260509T181643
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:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260509T181643
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/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/03/CAD_dateheader.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210716T180000
DTEND;TZID=UTC:20210718T154500
DTSTAMP:20260509T181643
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/
LOCATION:NC
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;VALUE=DATE:20210430
DTEND;VALUE=DATE:20210605
DTSTAMP:20260509T181643
CREATED:20210505T151136Z
LAST-MODIFIED:20210505T151247Z
UID:3181-1619740800-1622851199@cystinosis.org
SUMMARY:CRN at 2021 Virtual PAS
DESCRIPTION:The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering\, delivered virtually in 2021\, offers opportunities for a global audience of physician-scientists\, clinicians\, and educators to share research\, explore new ideas\, build career opportunities\, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here. \nThanks to our cystinosis advocate volunteers\, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org
URL:https://cystinosis.org/event/crn-at-2021-virtual-pas/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20200502T160000
DTEND;TZID=America/New_York:20200502T173000
DTSTAMP:20260509T181643
CREATED:20200414T234814Z
LAST-MODIFIED:20200414T235101Z
UID:2399-1588435200-1588440600@cystinosis.org
SUMMARY:Live Video Conference: Dependence\, Education & Employment
DESCRIPTION:Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET\, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on: \n\nEducation\nEmployment\nImportance of Being Self-Reliant vs Being Dependent\nEssential Needs & Medication\nGeneral conversation as time allows\n\nTo join the meeting: \nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nDownloading Zoom/Video Conference Preparation \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.
URL:https://cystinosis.org/event/live-video-conference-dependence-education-employment/
LOCATION:NC
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20260509T181643
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/
LOCATION:NC
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;VALUE=DATE:20191105
DTEND;VALUE=DATE:20191111
DTSTAMP:20260509T181643
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:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20260509T181643
CREATED:20190904T170703Z
LAST-MODIFIED:20190904T171910Z
UID:1676-1568764800-1569023999@cystinosis.org
SUMMARY:Global Genes: Rare Patient Advocacy Summit
DESCRIPTION:On behalf of the cystinosis community\, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. \nGlobal Genes has more information on their website and FAQs page. “As the largest gathering of rare disease patients\, caregivers\, thought leaders and other rare disease stakeholders in the world\, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.” \n \nAbove: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit. \n  \n  \n 
URL:https://cystinosis.org/event/global-genes-rare-patient-advocacy-summit/
LOCATION:Sheraton San Diego Hotel & Marina\, 1380 Harbor Island Drive\, San Diego\, CA\, 92101\, United States
CATEGORIES:Gatherings/Conferences
END:VEVENT
END:VCALENDAR