Cystinosis symposium: a rare disease model for comprehensive care
The time to provide a forum for collaboration in cystinosis research underscored the recent Cystinosis Symposium: A Rare Disease Model for Comprehensive Care held at the New York Academy of Medicine, on 31 May 2024, an event sponsored by the Cystinosis Research Network and numerous corporate entitie...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2025-07-01
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| Series: | Frontiers in Pediatrics |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2025.1630897/full |
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| author | Ashley M. Gefen Frederick J. Kaskel Frederick J. Kaskel Joshua J. Zaritsky |
| author_facet | Ashley M. Gefen Frederick J. Kaskel Frederick J. Kaskel Joshua J. Zaritsky |
| author_sort | Ashley M. Gefen |
| collection | DOAJ |
| description | The time to provide a forum for collaboration in cystinosis research underscored the recent Cystinosis Symposium: A Rare Disease Model for Comprehensive Care held at the New York Academy of Medicine, on 31 May 2024, an event sponsored by the Cystinosis Research Network and numerous corporate entities (Amgen and others). This conference was one of the first to address the glaring deficiencies in the care of children and adults with cystinosis by focusing on themes that are mutually applicable to multidisciplinary healthcare providers, educators, and families. The ultimate goal was to disseminate new information and awareness to all engaged in the cystinosis community and provide an algorithm to navigate more effectively the promising future toward a cure. |
| format | Article |
| id | doaj-art-aaa84a16a2454f8f910bd613df16bc84 |
| institution | Kabale University |
| issn | 2296-2360 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj-art-aaa84a16a2454f8f910bd613df16bc842025-08-20T03:32:20ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602025-07-011310.3389/fped.2025.16308971630897Cystinosis symposium: a rare disease model for comprehensive careAshley M. Gefen0Frederick J. Kaskel1Frederick J. Kaskel2Joshua J. Zaritsky3Division of Nephrology, Department of Pediatrics, Phoenix Children's Hospital, Phoenix, AZ, United StatesDivision of Nephrology, Department of Pediatrics, Children's Hospital at Montefiore, New York, NY, United StatesDivision of Nephrology, Department of Pediatrics, Albert Einstein College of Medicine, Bronx, NY, United StatesDivision of Nephrology, Department of Pediatrics, Phoenix Children's Hospital, Phoenix, AZ, United StatesThe time to provide a forum for collaboration in cystinosis research underscored the recent Cystinosis Symposium: A Rare Disease Model for Comprehensive Care held at the New York Academy of Medicine, on 31 May 2024, an event sponsored by the Cystinosis Research Network and numerous corporate entities (Amgen and others). This conference was one of the first to address the glaring deficiencies in the care of children and adults with cystinosis by focusing on themes that are mutually applicable to multidisciplinary healthcare providers, educators, and families. The ultimate goal was to disseminate new information and awareness to all engaged in the cystinosis community and provide an algorithm to navigate more effectively the promising future toward a cure.https://www.frontiersin.org/articles/10.3389/fped.2025.1630897/fullcystinosisrare diseasecomprehensive caretransitioncystinosis metabolic bone disease |
| spellingShingle | Ashley M. Gefen Frederick J. Kaskel Frederick J. Kaskel Joshua J. Zaritsky Cystinosis symposium: a rare disease model for comprehensive care Frontiers in Pediatrics cystinosis rare disease comprehensive care transition cystinosis metabolic bone disease |
| title | Cystinosis symposium: a rare disease model for comprehensive care |
| title_full | Cystinosis symposium: a rare disease model for comprehensive care |
| title_fullStr | Cystinosis symposium: a rare disease model for comprehensive care |
| title_full_unstemmed | Cystinosis symposium: a rare disease model for comprehensive care |
| title_short | Cystinosis symposium: a rare disease model for comprehensive care |
| title_sort | cystinosis symposium a rare disease model for comprehensive care |
| topic | cystinosis rare disease comprehensive care transition cystinosis metabolic bone disease |
| url | https://www.frontiersin.org/articles/10.3389/fped.2025.1630897/full |
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