learn

Name: Zoom night – November
Start: 2025-11-18T19:30:00+00:00
End: 2025-11-18T20:30:00+00:00
Location: Zoom

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 […]
February 2020
February 29, 2020

Podcast: Staying Positive while living with Cystinosis

Welcome to our podcast series - Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease. The initial podcast episode launches on Rare Disease Day - February 29, 2020. This episode focuses on positive aspects and inspiring stories of […]
October 2020
October 14, 2020 @ 7:00 pm - 8:30 pm

Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University School of Medicine and Fernanda Copeland, MS, RD. Head, Global Patient Advocacy & Engagement, AVROBIO are our guest speakers. Register today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA. FREE welcome kits are here - availability is limited.
August 2021
August 7, 2021 @ 4:00 pm - 5:00 pm

Cystinosis Sessions: August Video Call

The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. TOPICS ALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18, 2021). To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help […]
September 2021
Featured September 11, 2021 @ 4:00 pm - 5:00 pm

Cystinosis Sessions: September Video Call

Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The month's central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements, mental and physical well-being, side effects encountered after receiving COVID-19 vaccines, the booster shot available for immunocompromised […]
May 2022
Featured May 7, 2022

5th Annual Cystinosis Awareness Day

On 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 […]
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!
November 2025
November 18 @ 7:30 pm - 8:30 pm

Zoom night – November

Zoom

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 […]

September 2019

February 2020

October 2020

August 2021

September 2021

May 2022

July 2023

November 2025