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New Pulmonary Research Funded by Vaincre les Maladies Lysosomales

Vaincre les Maladies Lysosomales has announced funding for a new research project benefitting the cystinosis community: Characterization of Respiratory...

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Participants Requested: Cystinosis & the Brain Study

Cystinosis researcher, Ana Francisco and her team at Montefiore Medical Center/Einstein College of Medicine are exploring disease impact on...

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AVROBIO Cystinosis Focus Group

AVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...

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2021 CRN Summer Online Conference

Mark your calendars for the 2021 CRN Family Conference!

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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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Miles for Moose 5.7 Mile Virtual Walk/Run

Support the first annual Miles for Moose fundraiser.

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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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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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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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Playback – 2020 International Cystinosis Family Conference 

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

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