Cystinosis Research Network

06/02/2026

Cystinosis is a rare, genetic, metabolic, lysosomal storage disease that causes an abnormal accumulation of the amino acid cystine in various organs and tissues of the body.

For more info, visit our website (linked in comments)

05/31/2026

⏰Last Chance⏰

Applications close tomorrow (June 1) on a very special opportunity from the Live Like Laura Fun Fund.

One recipient will be selected for funding unlike those offered in the past - created in honor of what would have been Laura’s 30th birthday.

What makes this LEGACY opportunity different? Find out here: https://cystinosis.org/lllff/

05/31/2026

"Don't fake being okay, you only hurt yourself. Be real with what you are going through. Just don't let it consume you." -Unknown

05/25/2026

"I feel that this whole event has set me on a path towards advocacy and a life in public speaking that would have been difficult to find otherwise." - JB

Hear more about his experience on Capitol Hill this Rare Disease Week: https://tinyurl.com/545t5e97.

05/25/2026

Today we honor those who made the ultimate sacrifice.

Time outdoors, community service, a family BBQ, or the Murph Challenge, what are your Memorial Day plans?

05/25/2026

The unofficial start of summer is here.

Time to book your trip to see fellow cystinosis warriors in the Windy City through Speak Up, Speak Out (closing soon!)

Speak Up, Speak Out aims to help you find your voice through spoken word. Travel and accommodations provided for warriors and siblings (ages 13-22) and a chaperone.

See URL in image to sign up today.

05/24/2026

Some high level perspective on kidney donation.
Please consider sharing your spare 💚

05/21/2026

That's a wrap on the awareness day campaign.

Thanks to everyone who shared their POV and supported as a donor. To keep the awareness going beyond May 7, one of our Board members created custom rock art. A few lucky donors will be selected at random to receive a piece of their own!

"My 57 is this… I will paint these cystinosis support themed rocks for 57 minutes a week from now until May 7th, 2026. These will be given away to some folks who donate to CRN in celebration of Cystinosis Awareness Day." - Terri

05/19/2026

Curious about the basics of cystinosis?
Watch this video from National Organization for Rare Disorders, Inc. (NORD).

https://rarediseases.org/videos/cystinosis/

Cystinosis is a rare, multisystem genetic disorder characterized by the accumulation of an amino acid called cystine in different tissues and organs of the body including the kidneys, eyes, muscles, liver, pancreas and brain. The kidneys and eyes are the two organs most often affected. Generally, cy...

05/15/2026

At first, Carson’s symptoms didn’t seem alarming. A distracted eater, some weight loss, drinking more water than usual.

In our latest newsletter, the Hughes family shares the winding path that led to Carson’s diagnosis and the love that continues to carry them through it.

Thank you for sharing with us! (link in comments)

Emily Hughes Dan Hughes