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Tag: cystinosis

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CNE International Conference

Cystinosis Network Europe (CNE) is an umbrella grouping of patient support, advocacy and research organizations in Europe and beyond....

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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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Cystinosis Case Competition

AdvoSci Health hosted a Cystinosis Case Competition this fall semester. Students were tasked with learning foundational information about cystinosis...

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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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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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Cystinosis Sessions: October Video Call

Saturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with...

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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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See what’s going on in the cystinosis community.

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