Tags Posts tagged with "cystinosis"

cystinosis

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...

http://www.youtube.com/watch?v=L3jgMDFddww This informative video describes in simple layman's terms what cystinosis is, how it affects the body, and how it can be treated. But the...

If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But...

Los padres que aman a sus hijos pueden apreciar cuando los tratamientos están disponibles para llevar la esperanza y la curación cuando sus crías...

RareConnect explica la vida de Annie Kwakkel que nació con cistinosis, una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién...

Bitartrato de cisteamina es su nombre, y salvar vidas es su juego. No es frecuente que se escucha una droga conocida como (probablemente debido a...

Cistinosis, una de las muchas enfermedades raras, genéticas en el mundo de hoy ... Como en cualquier buen artículo, el lector primero debe estar provisto...