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 thoughts, express our feelings, and come together. Use this link to log into the meeting. We hope to see you there! Questions? Email Chelsea Meschke […]
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 our Vice President of Family Support, Chelsea Meschke. March 18, 2025 7:00pm Eastern For Zoom access, visit https://tinyurl.com/t6zek7b2 Email Chelsea with any questions at chelseam@cystinosis.org.
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 spend time together. September 16 7:30p ET Zoom https://tinyurl.com/yy3v7euh Our host is Chelsea Meschke, CRN VP of Family Support, licensed social worker, and mom to two […]
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 […]
Cystinosis Community Zoom Night Thursday, January 15 at 7:30 PM ET Zoom link: https://us06web.zoom.us/j/88075560653 Join our next Zoom night for an evening of connection and conversation. These calls are open to everyone living with and impacted by cystinosis, however, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences, ask […]
Taking place on the last day of February, Rare Disease Day is a global movement which aims to promote equity in social opportunities, healthcare, and access to diagnosis and therapies for individuals living with rare diseases. If you are looking for cystinosis awareness opportunities, you've come to the right place. Here are some ideas: Share […]
Join us for our March Zoom call, where we’ll be coming together to talk about kidney transplants. For many in the cystinosis community, the journey includes at least one (if not multiple) kidney transplants. This open, supportive conversation will explore life before transplant, dialysis, re-transplantation, and the realities in between. With voices from across the […]