Halloween Trivia Night
Test your knowledge of everything Halloween. ALAB members are hosting a free, online trivia night. October 29th at 8:30pm ET Jump on the Zoom call for a chance to win […]
Test your knowledge of everything Halloween. ALAB members are hosting a free, online trivia night. October 29th at 8:30pm ET Jump on the Zoom call for a chance to win […]
CRN's Adult Leadership Advisory Board will host a Q&A with Levi Peterson and Samantha Saver of Patients Rising. Tap into their experience navigating health insurance during this live session. Register […]
The Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series. Are you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help […]
See you in Cincinnati, Ohio! On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. Draft Agenda 8:30a […]
May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD college professor). For the Zoom link, please register for free using this link. Event is May 19 at 7p ET. We hope to see you […]
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 […]
Registration for the Cystinosis Network Europe (CNE) International Conference, hosted by Cystinosis Foundation UK in Manchester in July are now open! Register here. Scientific meeting agenda Family meeting agenda CNE is offering assistance to families who will find the financial burden of travelling very high. We are looking forward to an amazing family and community […]