meeting

Name: Adults August Meetup
Start: 2024-08-26T18:00:00+00:00
End: 2024-08-26T19:00:00+00:00

September 2019
September 18, 2019 - September 20, 2019

Global Genes: Rare Patient Advocacy Summit

Sheraton San Diego Hotel & Marina 1380 Harbor Island Drive, San Diego, CA, United States

On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. Global Genes has more information on their website and FAQs page. "As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders […]
December 2020
December 5, 2020 @ 12:00 pm - 1:30 pm

Cystinosis Sessions:

Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month's topics include the holidays, COVID-19 and eye drops. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. […]
February 2021
February 3, 2021 @ 8:00 pm - 8:30 pm

Cystaran Town Hall: Product Shortage 2021 Expectations

Leadiant Biosciences, the distributor of CYSTARAN, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed: Cystaran shortage updates Next steps and what to anticipate Important contact information Questions from the community Registration is open here until the event begins, […]
April 2021
April 30, 2021 - June 4, 2021

CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, clinicians, and educators to share research, explore new ideas, build career opportunities, and collaborate on future projects. Presentations cover issues of interest to generalists as […]
July 2021
Featured July 16, 2021 @ 6:00 pm - July 18, 2021 @ 3:45 pm

2021 CRN Summer Online Conference

Mark your calendars for the 2021 CRN Family Conference!
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!
August 2024
August 26, 2024 @ 6:00 pm - 7:00 pm

Adults August Meetup

The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month's topic: Mental Health - Trauma. Special guest is Kerry Heckman, a licensed therapist from Seattle, Washington. Register here to take part in the discussion.

September 2019

December 2020

February 2021

April 2021

July 2021

July 2023

August 2024