Name: Cystinosis Sessions: July Video Call
Start: 2022-07-09T16:00:00+00:00
End: 2022-07-09T17:00:00+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 […]
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.
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 2022
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 […]

September 2019

October 2020

May 2022

July 2022