Tags Posts tagged with "cystinosis"

cystinosis

The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different...

….Now what? A master’s degree in teaching? Would that even make sense for my life if I couldn’t even work an eight hour day...

Chandler Moore, a boy with a rare disease will be getting the love and support he needs at an annual event in his home...

“What would I give if I could live out of these waters? What would I pay to spend a day warm on the sand? ...

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...

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...

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,...

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...

I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time....

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...

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...

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...