Cystinosis Sessions: July Video Call
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS The conversation topics include returning to the workplace after COVID-19 and […]
10 events found.
Events
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2021 CRN Summer Online Conference
FeaturedMark your calendars for the 2021 CRN Family Conference!
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Cystinosis Sessions: August Video Call
The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. TOPICS ALAB members will […]
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CRN Golf Tournament: Myrtle Beach
FeaturedMyrtle Beach National Golf Club 4900 National Drive, Myrtle Beach, SC, United StatesThe 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 […]
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Cystinosis Sessions: September Video Call
FeaturedSaturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The month's central topic is COVID-19 and vaccines. This is a fluid […]
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Cystinosis Sessions: October Video Call
FeaturedSaturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events, travel and vacation […]
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Cystinosis Sessions: January Video Call
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. Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are […]
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A Benefit for Elle
FeaturedThe Hilltop 950 Pavillion Street, Cincinnati, OH, United StatesJoin 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 […]
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Rare Disease Day 2022
FeaturedFebruary 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 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 […]
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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 […]
