Author: cystinosisrn

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For Cystinosis Families: Free Needle Poke Wellness Kits

Angel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were...

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The CRN Welcomes Tim Wyman

On March 8, 2021, the Cystinosis Research Network announced Tim Wyman as the new interim President. The position was...

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Joint Research Funding into the Molecular Causes of Infertility in Male Cystinosis Patients

Cystinosis Ireland and the CRN are delighted to announce  they will jointly fund research project entitled “Perturbations in the...

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New CYSTARAN® Eye Drop Manufacturer Secured

February 12, 2021Dear Cystinosis Community:  We wanted to share an update from Leadiant Biosciences regarding the CYSTARAN® (cysteamine ophthalmic...

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Celebrating Life and Rare Disease Day

In Honor of Laura’s 35th Birthday and Rare Disease Day. An article by Marybeth Krummenacker I was trying to...

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Now Available: CYSTARAN Town Hall Recording

On February 3, 2021, Leadiant and the Cystinosis Research Network held a Town Hall to address the CYSTARAN eye...

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New Cystinosis Gene Therapy Data from AVROBIO

AVROBIO Announces 100% Kidney Substrate Reduction at 12 Months Post-Gene Therapy in...

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Research Results: Community-led Grip Strength Study

Thanks in part to volunteers at both the 2017 and 2019 CRN Family Conferences, this study was able to...

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Shortage Impacting WBC Testing Kits

An announcement from Horizon Therapeutics: With the growing dry ice shortage there has been an increased demand for NanoCool...

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Mental Health Survey from Children’s Friend Inc.

Children’s Friend Inc. is studying the experiences in and barriers to accessing mental health services for families. For the...

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