The CRN is hosting an in-person event for healthcare professionals.
Join us May 31, 2024 at The New York Academy of Medicine.
Healthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals, refreshments and cocktail hour. See the draft agenda and register below to secure your spot now for this pivotal event!
A limited number of stipends are available to cover travel costs for non-regional HCP attendees. Priority will be given to HCPs who are 1. treating cystinosis patients 2. interested in advancing their knowledge in addressing the diverse, multi-systemic challenges posed by this rare illness 3. seeking to become more engaged with the community as a whole. Interested parties can email info@cystinosis.org for details.
Overview
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, educators, and families, and work towards disseminating new information and raising awareness within the cystinosis community. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure.
A special thank you to our sponsors:
