• Rare Disease News
  • [email protected]
Facebook-f Instagram Linkedin-in Pinterest Twitter
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
  • Join PW

Cystinuria-lysinuria

Home » Cystinuria-lysinuria
This Research Study Explored the Molecular Mechanisms of Cystinuria
felixioncool / Pixabay

This Research Study Explored the Molecular Mechanisms of Cystinuria

  • Post author:Jessica Lynn
  • Post published:June 9, 2022
  • Post category:Cystinuria-lysinuria

In the past, there have been a variety of research studies exploring and working to learn more about cystinuria, a rare genetic condition causing cystine, an amino acid, to accumulate…

Continue Reading This Research Study Explored the Molecular Mechanisms of Cystinuria
Patient Story: Brother Saves Sister with Cystinuria Through a Kidney Transplant

Patient Story: Brother Saves Sister with Cystinuria Through a Kidney Transplant

  • Post author:Alyssa Stevens
  • Post published:May 9, 2022
  • Post category:Cystinuria-lysinuria

A recent article shared the story of a woman diagnosed with cystinuria whose life was saved after her younger brother donated one of his kidneys. Cystinuria Cystinuria is a rare…

Continue Reading Patient Story: Brother Saves Sister with Cystinuria Through a Kidney Transplant
ICYMI: Tiopronin Available in US for Severe Homozygous Cystinuria
Photo by Paweł Czerwiński on Unsplash

ICYMI: Tiopronin Available in US for Severe Homozygous Cystinuria

  • Post author:Jessica Lynn
  • Post published:August 27, 2021
  • Post category:Cystinuria-lysinuria

  Sometimes, it can be difficult to acquire treatment options for patients with rare diseases. Brand name products may also be expensive and relatively inaccessible, prompting the need for generic…

Continue Reading ICYMI: Tiopronin Available in US for Severe Homozygous Cystinuria
Rare Classroom: Cystinuria
source: shutterstock

Rare Classroom: Cystinuria

  • Post author:James Moore
  • Post published:May 19, 2021
  • Post category:Cystinuria-lysinuria

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Cystinuria
Virtual Kidney March to Take Place Aug. 9 to Sept. 12
Source: Pixabay

Virtual Kidney March to Take Place Aug. 9 to Sept. 12

  • Post author:Jessica Lynn
  • Post published:May 18, 2021
  • Post category:Cystinuria-lysinuria

  Unfortunately, the COVID-19 pandemic has sidelined many events, fundraisers, and other opportunities over the last 14 months. But the pandemic won't stop the Kidney Foundation of Canada from holding…

Continue Reading Virtual Kidney March to Take Place Aug. 9 to Sept. 12
Treating Pancreatic Cancer with Cysteinase: A Potential New Approach
mohamed_hassan / Pixabay

Treating Pancreatic Cancer with Cysteinase: A Potential New Approach

  • Post author:Jessica Lynn
  • Post published:April 17, 2020
  • Post category:Cystinuria-lysinuria/Pancreatic Cancer

According to a news release, researchers have found that cysteinase, a compound designed to treat a rare kidney stone disease, may also be effective in treating patients with pancreatic cancer.…

Continue Reading Treating Pancreatic Cancer with Cysteinase: A Potential New Approach

OF INTEREST


XLH Image


X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition


podcast setup on a desk


Catalyst’s LEMS Aware Podcast Helps Connect Patients

Patient Stories

GET INVOLVED

Make a difference, share your experiences and get paid. Opt-in & join Patient Worthy’s panel for paid opportunities such as Surveys, Market Research, Patient Advisory Panels & much more.

JOIN NOW

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

READ MORE

RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

READ MORE
SIGN UP FOR OUR NEWSLETTER
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Let’s Work Together!

Partner With Us
Submit a Story
Become a Contributor

Keep Up to Date

Subscribe to Our Newsletter
Check Out Rare Events
Get Inspired By Our Memes

Learn More

About Us
Rare Diseases and Conditions
Terms of Use
Privacy Policy
Privacy Policy for CA Residents
EU Privacy Notice

© Copyright Patient Worthy

Sign Up With a Patient Worthy Account and Share Your Rare Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info

We're Happy You're Here!

What best describes you when it comes to rare disease? (check all that apply)

What rare disease(s)/conditions are most important to you?

Visit Home Page or

Thank you for signing up for a Patient Worthy Account!

Have a rare disease story to share? Let us know

Share Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info