Name: Family Planning with Cystinosis
Start: 2024-04-28T19:00:00+00:00
End: 2024-04-28T20:00:00+00:00
Location: Virtual

July 2022
CNE International Conference

Featured July 7, 2022 - July 10, 2022

MTC1 Maria-Theresiacollege Sint-Michielsstraat 6, 3000 Leuven, Belgium

This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10. Access details here including: Conference website Registration page Hotel and lodging info Session details click here Questions? Email cystinose@ziggo.nl Call […]
Cystinosis Sessions: July Video Call

July 9, 2022 @ 4:00 pm - 5:00 pm

Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants. Calls are held quarterly - we hope you are able to join us! To […]
February 2023
Rare Disease Day 2023

February 28, 2023

February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors. Here are […]
March 2023
Informational Q&A: Cystinosis QoL Study

March 9, 2023 @ 10:00 am - 11:00 am

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, […]
May 2023
Cystinosis Awareness Day

May 7, 2023

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 […]
July 2023
2023 Family Conference – Nashville

July 13, 2023 - July 15, 2023

Nashville Marriott at Vanderbilt University 2555 West End Avenue, Nashville, TN, United States

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!
October 2023
Halloween Trivia Night

October 29, 2023 @ 8:30 pm - 9:30 pm

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 a $25 gift card. Open to teens and adults - use this link at the time of the event; no registration necessary. We hope to […]
February 2024
Health Insurance – Online Q&A

February 22, 2024 @ 7:00 pm - 8:00 pm

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 to join the Zoom call on February 22 @ 7pm ET using this link.
Rare Disease Day 2024

February 29, 2024

By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about […]
April 2024
Family Planning with Cystinosis

April 28, 2024 @ 7:00 pm - 8:00 pm

Virtual

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 […]

July 2022

February 2023

March 2023

May 2023

July 2023

October 2023

February 2024

April 2024