Rare Disease Day 2022
Featured
February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the global event campaigns for equity for the over 7,000 rare diseases […]
10 events found.
CRN
Events
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Cystinosis Sessions: April Video Call
FeaturedDiet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday, April 9 at 4:00pm ET. This event is open for all to attend. We hope to see you there! To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions […]
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5th Annual Cystinosis Awareness Day
FeaturedOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This 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: Check out the Cystinosis Warrior Impact […]
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2nd Annual SC Golf Fundraiser
FeaturedWild Wing Avocet Golf Course 1000 Wild Wing Boulevard, Conway, South CarolinaGail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser […]
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Rare Disease Day 2024
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 […]
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Family Zoom Night – February
Virtual EventCRN Family Zoom Night All 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 […]
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2025 CRN Family Conference
Amway Grand 187 Monroe Ave NW, Grand Rapids, United States -
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Zoom Night – September
ZoomVirtual EventWe’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. September 16 7:30p ET Zoom https://tinyurl.com/yy3v7euh Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to two […]
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Zoom night – November
ZoomJoin our next Zoom night on Tuesday, November 18th. Calls are open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and spend time together. November 18 7:30p ET Zoom link: https://tinyurl.com/7s2datft Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to […]
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2026 CRN Regional Family Meetup
Hyatt Place St Johns Town Center 4742 Town Center Parkway, Jacksonville, FL, United StatesFamily and friends within driving distance of Jacksonville, Florida, do not want to miss this event! Open 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 […]
$20
