Community Events

Medical Symposium: A Rare Disease Model for Comprehensive Care

May 31, 2024

Register now

Registration is now open to healthcare providers, researchers and professionals with a desire to learn more about comprehensive care in rare disease.

Please note: This is not a patient/family meeting. This event is tailored to providers and professionals, however, we welcome patients who are interested in learning more about their care.

This one-day, in-person symposium will be held Friday, May 31, 2024 at The New York Academy of Medicine.

Review the latest advances in our understanding of cellular and molecular abnormalities in nephropathic cystinosis, which have led to three major breakthroughs. We’ll explore the implementation of effective treatments for interrupting disease progression from childhood to adulthood, and the exciting potential of cutting-edge gene therapies to eradicate this lifelong condition. Despite these promising developments, substantial gaps and challenges persist in providing comprehensive care to cystinosis patients and families. Learn how earlier genetic recognition and timely diagnosis can make a difference. Find out how we’re bridging the gap to construct multidisciplinary healthcare teams extending from primary care to specialized support, including social work, nutritionists, educators, and quality of life navigators.

Be a part of this transformative conference, one of the first to address these glaring deficiencies in cystinosis care. Together, we’ll focus on themes that apply to healthcare providers and educators and work towards disseminating new information and raising awareness within the cystinosis and rare communities. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure. 

Don’t miss out on this pivotal event!