connect

Name: Cystinosis Sessions: March Video Call
Start: 2021-03-06T16:00:00+00:00
End: 2021-03-06T17:00:00+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 […]
June 2020
June 6, 2020 @ 12:00 pm - 1:30 pm

Cystinosis Sessions: Overcoming Limitations & Goal Setting

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include: Facing challenges Peer pressure Limitations & how to overcome them Goal setting Downloading Zoom/Video Conference Prep Secure access to a mobile device (PC, Apple, Android), desktop […]
September 2020
September 19, 2020 @ 5:00 pm - 6:30 pm

Caregivers Connect: Virtual Meetup

Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect with other caregivers. This is a free networking opportunity. Register at https://us02web.zoom.us/meeting/register/tZUpde2tqj8uH9yGl5nmGG6v1TvprXaLgtOV. FREE welcome kits - limited availability. We hope to see you there!
September 29, 2020 @ 7:00 pm - 8:30 pm

Cystinosis Basics: Virtual Meetups

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of Medicine is our expert speaker. Join us by registering today at https://us02web.zoom.us/webinar/register/WN_HU0G6SQuR4W_G8mmFr3bog. FREE welcome kits - limited availability. We hope you can join us!
October 2020
October 6, 2020 @ 7:00 pm - 8:30 pm

Cystinosis & Mental Health: Virtual Meetup

Let's have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed psychologist, Dr. Cortney Taylor Zimmerman will guide the meetup. Register today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ. Welcome kits are here - with limited availability.
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.
November 2020
November 7, 2020 @ 4:00 pm - 5:00 pm

Cystinosis Sessions: Diet & Nutrition

Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series - LIVE- on Saturday, November 7th at 4:00 pm ET. The session will focus on Diet Nutrition Regional food favorites 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 […]
March 2021
Featured March 6, 2021 @ 4:00 pm - 5:00 pm

Cystinosis Sessions: March Video Call

All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March 6th. This "Cystinosis Session" will focus on the topic of relationships. 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 […]

September 2019

June 2020

September 2020

October 2020

November 2020

March 2021