Tags Posts tagged with "cystinosis"

cystinosis

One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people...

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...

You're happily tucking your toddler in for her afternoon nap when she starts to panic. Where's her favorite blankie and stuffed penguin? A peaceful nap...

Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an...

Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using...

Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to...

Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you...

Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses...

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...

Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and...

It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but...

The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.

The Cystinosis Research Foundation is the largest provider of grants for cystinosis research. When we say largest we don't mean in the country, we...

If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a...

On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to...

Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting...

Cuando la mamá de Hagan dice a los 12 meses de edad, muchacho irlandés que él es uno en un millón, no es broma...

Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers...

Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her...

A 10-year-old boy in Colorado will be ringing in the new year with a new kidney, and his parents couldn't be more relieved. Marcus...

On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone...

5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 a.m. Ella convenció despierto por sus padres...

Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el...

It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their...

Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white...