Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN…
2023 CRN Conference July 13-15, 2023 After four years apart, we welcome you to join us in Nashville, Tennesse, lovingly known as “Music City.” In addition to being surrounded by…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part Two We were told about what…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part One At this stage, the ED…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Oscar was born in January 2020. He was a…
A new study is in the works, and it will investigate how cystinosis, a genetic disorder characterized by an accumulation of the amino acid cystine in the cells, leads to…
The Cystinosis Research Network (CRN) has created a new program to bring light to cystinosis families during these uncertain times. It is called the Brighter Days Care Package Program. Brighter…
This wonderful story was brought to Patient Worthy by our partners, the Cystinosis Research Network (CRN). The season of giving started off in an unconventional setting for the Moore Family. Chandler…
On Cystinosis Awareness Day, Clinton Moore of Delaware, who is also president of the Cystinosis Research Network, will attempt to walk 57 miles in a single day. This event will…
I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early 30’s with a disease which…
Our wonderful partners at the Cystinosis Research Network (CRN) are providing the first series of live broadcasts from a Cystinosis conference! Simply make sure you're connected to the internet and…
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…
2016 Rare Disease Week on Capitol Hill. Amid all the medical experts, pharmaceutical executives, patients and patient advocates, there's a boy of 10. He sits quietly during the long hours,…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
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