The CRN Family Conference is back...and in-person for the summer of 2023. Join us July 13 - July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. For agenda, travel scholarships and more details, click here. We look forward to seeing you there!
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 […]
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 […]
A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom, this meeting is for you! Join the Zoom call Monday, July 22 at 7pm ET.We will discuss- Individual Education Plans (IEPs) - 504 plans - Medication schedules- Overall support strategies ...and more No registration needed. […]
CRN Family Zoom Night All are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share […]
Rare Disease Day is February 28, 2025. It is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here. The 2025 theme: More than you can […]
Join us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences, ask questions, and connect with others. Led by […]
Now in it's eighth year, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? There are many ways to show your support. Be Seen, […]
We’re keeping it simple with no agenda, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and […]
Join our next Zoom night on Tuesday, November 18th. Calls are open to everyone living with and impacted by cystinosis. It is a chance to connect, ask questions, and spend time together. November 18 7:30p ET Zoom link: https://tinyurl.com/7s2datft Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to […]