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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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BEGIN:VEVENT
DTSTART;TZID=UTC:20251118T193000
DTEND;TZID=UTC:20251118T203000
DTSTAMP:20260403T201015
CREATED:20251006T155754Z
LAST-MODIFIED:20251006T155754Z
UID:5086-1763494200-1763497800@cystinosis.org
SUMMARY:Zoom night - November
DESCRIPTION:Join our next Zoom night on Tuesday\, November 18th.  \nCalls are open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nNovember 18\n 7:30p ET\nZoom link: https://tinyurl.com/7s2datft \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-november/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260115T193000
DTEND;TZID=UTC:20260115T203000
DTSTAMP:20260403T201015
CREATED:20251008T161439Z
LAST-MODIFIED:20251230T194727Z
UID:5088-1768505400-1768509000@cystinosis.org
SUMMARY:Zoom Night - January
DESCRIPTION:Cystinosis Community Zoom Night\nThursday\, January 15 at 7:30 PM ET\nZoom link: https://us06web.zoom.us/j/88075560653 \nJoin our next Zoom night for an evening of connection and conversation. These calls are open to everyone living with and impacted by cystinosis\, however\, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences\, ask questions\, and simply spend time together. \nHosted by Chelsea Meschke\, CRN Vice President of Family Support\, licensed social worker\, and mom to two cystinosis warriors. \nSee you there!
URL:https://cystinosis.org/event/zoom-night-january/
LOCATION:FL
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:20260403T201015
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:FL
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260310T190000
DTEND;TZID=UTC:20260310T200000
DTSTAMP:20260403T201015
CREATED:20260116T171637Z
LAST-MODIFIED:20260116T172757Z
UID:5122-1773169200-1773172800@cystinosis.org
SUMMARY:Zoom Night - March
DESCRIPTION:Join us for our March Zoom call\, where we’ll be coming together to talk about kidney transplants. \nFor many in the cystinosis community\, the journey includes at least one (if not multiple) kidney transplants. This open\, supportive conversation will explore life before transplant\, dialysis\, re-transplantation\, and the realities in between. \nWith voices from across the community\, this call offers a chance to learn from one another\, ask questions\, and feel more prepared for what may lie ahead no matter where you are today. \n\nTuesday March 10\n7:00 pm et / 6:00 pm ct / 5:00 pm mt / 4:00 pm pt\nZoom meeting link: https://us06web.zoom.us/j/88412838095\n\nCRN VP of Family Support\, Chelsea Meschke will lead the event. Chelsea’s professional background is in social work and she is the caregiver of two young boys with cystinosis. \n 
URL:https://cystinosis.org/event/zoom-night-march/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2026/01/transplant3.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260502T083000
DTEND;TZID=UTC:20260502T170000
DTSTAMP:20260403T201015
CREATED:20260219T190847Z
LAST-MODIFIED:20260325T013306Z
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 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 and will be prioritized on a first come basis. Spots are limited. \nRegister here \nFor questions\, email chelseam@cystinosis.org. See you in Jacksonville this May!
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:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260403T201015
CREATED:20250904T143805Z
LAST-MODIFIED:20260306T141348Z
UID:5071-1778112000-1778198399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2026
DESCRIPTION:Join the Cystinosis Awareness Day Movement! \nHonor our 2\,000+ warriors in the most meaningful way to you. Let’s educate\, raise awareness and raise funds.   \nMay 7th marks the 9th Annual Cystinosis Awareness Day (CAD). It started as a reference to the 57kb deletion in the CTNS gene\, the most common genetic cause of nephropathic cystinosis. Since then\, CAD has turned into a global day of recognition. \nThis year we ask – What is your 57?  \nIt is a call to action that can be big or small; 57 reflective words about the disease or 57 friend and family contributions\, 57 minutes of walking to 57 acts of kindness. \nWe encourage everyone to choose something meaningful they can share and spread the word. Every single action makes a difference in the fight against cystinosis. \nHow will you choose to honor this momentous occasion? \n(To donate via our secure\, tax-deductible form\, click here)
URL:https://cystinosis.org/event/cystinosis-awareness-day-2026/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260703
DTEND;VALUE=DATE:20260705
DTSTAMP:20260403T201015
CREATED:20250904T141319Z
LAST-MODIFIED:20250904T141654Z
UID:5061-1783036800-1783209599@cystinosis.org
SUMMARY:2026 Cystinosis Network Europe International Conference
DESCRIPTION:Cystinosis Ireland hosts the Cystinosis Network Europe’s International Conference on July 3\, 2026. The Dublin event offers scientific and family sessions\, child care\, time for socialization and translation for seven different languages. For details\, go to https://www.cystinosis-europe.eu.
URL:https://cystinosis.org/event/cne-international-conference-2/
LOCATION:Royal Marine Hotel\, Dun Laoghaire\, Dublin\, Ireland
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2025/09/CNE-2026-conference-announcement-1-year-out-.png
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