Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars

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…

Continue Reading Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars
The 2017 Cystinosis Research Network Family Conference is Coming Soon!
https://pixabay.com/en/affection-beach-parents-child-1866868/

The 2017 Cystinosis Research Network Family Conference is Coming Soon!

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…

Continue Reading The 2017 Cystinosis Research Network Family Conference is Coming Soon!
Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood
https://pixabay.com/en/shoes-relax-teenager-shoes-828414/

Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

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…

Continue Reading Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

Continue Reading Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval
Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…
https://pixabay.com/en/coffee-pen-notebook-caffeine-cup-2306471/

Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…

I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…

Continue Reading Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…

Editor’s Choice: Our Mind is a Drug and the Dangers of Superbugs

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 have identified a superbug that…

Continue Reading Editor’s Choice: Our Mind is a Drug and the Dangers of Superbugs
Close Menu