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2nd Annual SC Golf Fundraiser

Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...

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5th Annual Cystinosis Awareness Day

On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...

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Cystinosis Warrior Impact Program

In honor of 5th Annual Cystinosis Awareness Day a new global initiative has been announced: the Cystinosis Warrior Impact...

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Cystinosis Sessions: April Video Call

Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our...

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Rare Disease Day 2022

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...

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A Benefit for Elle

Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...

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How A Rare Diagnosis Impacts A Family

The Dicks Family sat down for a candid conversation with Daniel Levine from Global Genes. During the latest podcast,...

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Over $40k in Cystinosis Scholarships Awarded

This summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...

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Cystinosis Sessions: September Video Call

Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS  The...

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FDA Authorizes Additional COVID-19 Vaccine Dose for Certain Immunocompromised Individuals

Members of the CRN’s Scientific Review Board have compiled articles for those interested in learning more about an additional...

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