MINI REVIEW article
Front. Pediatr.
Sec. Pediatric Nephrology
Volume 13 - 2025 | doi: 10.3389/fped.2025.1630897
This article is part of the Research TopicCystinosis Symposium: A Rare Disease Model for Comprehensive CareView all 4 articles
Cystinosis Symposium: A Rare Disease Model for Comprehensive CAre
Provisionally accepted
- 1Children's Hospital at Montefiore, New York, United States
- 2Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, New York, United States
- 3Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx New York, United States
- 4Phoenix Children's Hospital, Mesa Arizone, United States
- 5Phoenix Children's Hospital, Phoenix, United States
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The time to provide a forum for collaboration in cystinosis reserach underscored the recent: Cystinosis Sumposium: A Rare Disease Model for Comprehensive Care held at the New York Academy of Medicine, on May 31st, 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 these glaring deficiencies in the care of children and adults with cystinosis by focusing on themes that are mutually applicable to multidisciplinary health care 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 towards a cure.
Keywords: Cystinosis, rare disease, comprehensive care, Transition, cystinosis metabolic bone disease
Received: 18 May 2025; Accepted: 03 Jul 2025.
Copyright: © 2025 Kaskel, Gefen and Zaritsky. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence:
Frederick Kaskel, Children's Hospital at Montefiore, New York, United States
Joshua Zaritsky, Phoenix Children's Hospital, Phoenix, United States
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