Welcome to Next Generation of Cystinosis

Next Generation of Cystinosis is a non-profit volunteer-run organization founded in 2019 and incorporated in 2020. Our vision is to be an organization run by and for adults 18 years and older affected by cystinosis. Our mission is to have open and honest dialogue about the plethora of issues that affect them.

Emotional Support

We have partnered with the Center for Chronic Illness to launch a web-based cystinosis support group in April.

If you are an adult living with cystinosis please sign up now at www.supportgroupscentral.com/CCI. You can create a free account and subscribe to the Center for Chronic Illness to join the web-based support group. Ask any questions by emailing info@thecenterforchronicillness.orgChat with you there!


Many adults with cystinosis have unique concerns regarding the current pandemic. The pediatric and parent communities have received wise medical advice that we respect and heed; however, we (Rebekah Palmer and Jessica Britt Jondle) also wanted to seek out the wisdom of a doctor specializing in adult needs. (Covid-19)

View Dr. Richard H. Simon’s full statement.

[Image Description: Cystinosis and COVID 19 “People with cystinosis and significant respiratory muscle weakness who develop pneumonia during COVID-19 have a greater risk of needing intensive care unit treatment and breathing assistance with mechanical ventilation than if their respiratory muscles were strong” Dr. Richard H. Simon, MD Pulmonary and Critical Care Medicine Division University of Michigan Medical School]

Join us

We are here to support you. We know cystinosis can be a struggle and you are not in it alone. Sign up here to become a member and receive updates from us and view our upcoming newsletter.

Sign up here!

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