2021 CRN Summer Online Conference
Featured
Mark your calendars for the 2021 CRN Family Conference!
10 events found.
Cystinosis Research Network
Events from this organizer
-
-
-
-
5th Annual Cystinosis Awareness Day
FeaturedOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: Check out the Cystinosis Warrior Impact […]
-
-
Informational Q&A: Cystinosis QoL Study
We will host an informational session on the CRN funded study "Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US" The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. March 9, […]
-
-
Cystinosis Awareness Day
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it's sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year's campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, […]
-
-
2023 Family Conference – Nashville
Nashville Marriott at Vanderbilt University 2555 West End Avenue, Nashville, TN, United StatesThe 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!
-
-
Cystinosis Awareness Day – Family Meetup
Cincinnati Marriott RiverCenter 10 W Rivercenter Blvd, Covington, Kentucky, United StatesSee 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 […]
-
Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
The New York Academy of Medicine 1216 5th Ave, New York, NY, United StatesThe 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 […]
$50 -
-
School Prep + Cystinosis (virtual)
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. […]
-
-
Family Zoom Night – February
Virtual EventCRN 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 2025
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 […]
