Gatherings/Conferences

Name: School Prep + Cystinosis (virtual)
Start: 2024-07-22T19:00:00-04:00
End: 2024-07-22T20:30:00-04:00

July 2022
Featured July 7, 2022 - July 10, 2022

CNE International Conference

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 […]
July 9, 2022 @ 4:00 pm - 5:00 pm

Cystinosis Sessions: July Video Call

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 […]
July 2023
July 13, 2023 - July 15, 2023

2023 Family Conference – Nashville

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

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

Health Insurance – Online Q&A

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

Family Planning with Cystinosis

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 […]
May 2024
May 4, 2024 @ 8:30 am - 4:30 pm

Cystinosis Awareness Day – Family Meetup

Cincinnati Marriott RiverCenter 10 W Rivercenter Blvd, Covington, Kentucky, United States

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 19, 2024 @ 7:00 pm - 8:00 pm

Adult May Meetup – Mental Wellness

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 […]
May 31, 2024 @ 7:45 am - 7:15 pm

Cystinosis Symposium: A Rare Disease Model for Comprehensive Care

The New York Academy of Medicine 1216 5th Ave, New York, NY, United States

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 […]

$50
July 2024
July 22, 2024 @ 7:00 pm - 8:30 pm

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. […]

July 2022

July 2023

October 2023

February 2024

April 2024

May 2024

July 2024