“What would I give if I could live out of these waters? What would I pay to spend a day warm on the sand? Bet'cha on land they understand Bet…
I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…
I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story…
The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness! Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino…
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…
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 run 5Ks, some people go…
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…
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 won't occur without it! With…
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 upcoming event. Lastly, 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 fear to serve you in…
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 see with his purple crayon,…
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 a general overview of the disease.…
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 living with CRPS and other…
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…
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 emerging adults living with cystinosis. There…
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 at the end of the…
What is it about twins that's so darn fascinating? We idolize them when they’re famous (ahem, Mary-Kate and Ashley), and we envy them when we’re young (I know I’m not…
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 mean in the world. In fact,…
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 high school senior waits by the…
On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to support their loved ones, suffering from…
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 to be too much and…
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