• About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
  • Join PW
Click Here To Share Your Story with Narcolepsy
Click Here to Read Real Stories From Patients And Caregivers
Click Here To Share Your Story With MASH

Daily Archives: September 22, 2025

  1. Home>
  2. 2025>
  3. September>
  4. 22
A Rare Diagnosis: Families in Wales Face the Reality of DRPLA

A Rare Diagnosis: Families in Wales Face the Reality of DRPLA

  • Post author:Bree Clare
  • Post published:September 22, 2025
  • Post category:Dentatorubral pallidoluysian atrophy

In the heart of south Wales, a small but growing community is grappling with the devastating impact of Dentatorubral-pallidoluysian atrophy (DRPLA), a rare inherited neurological disorder that, until recently, was…

Continue Reading A Rare Diagnosis: Families in Wales Face the Reality of DRPLA
Controlling The Response After Cancer

Controlling The Response After Cancer

  • Post author:PW Collaborator
  • Post published:September 22, 2025
  • Post category:Testicular Cancer

Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the original article, please click here. One day, many years ago,…

Continue Reading Controlling The Response After Cancer
How One Family is Navigating Life with XLID98, A Genetic Condition with Only 298 Known Cases

How One Family is Navigating Life with XLID98, A Genetic Condition with Only 298 Known Cases

  • Post author:Jessica Lynn
  • Post published:September 22, 2025
  • Post category:Rare Disease

An estimated 47% of infants have some form of plagiocephaly (a flat spot on the head), and up to 10% will eventually need a corrective helmet to help reshape their skull. Some…

Continue Reading How One Family is Navigating Life with XLID98, A Genetic Condition with Only 298 Known Cases
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
Read Full Story Here
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

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 Notice
Privacy Policy for CA Residents
EU/UK Privacy Notice
Data Privacy Framework: Consumer Privacy Policy
Consumer Health Data Privacy Policy
Cookie Notice

Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope

© Copyright 2024 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