Click Here To Share Your Rare Disease Story
Click Here To Share Your Story With ADHD
Click Here To Share Your Story With MASH
  • 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

dystonia awareness

  1. Home>
  2. dystonia awareness>
  3. Page 2
How To Be A True Hero Despite Living With Rare a Disease
Pixabay

How To Be A True Hero Despite Living With Rare a Disease

  • Post author:Patient Worthy Contributor
  • Post published:October 14, 2015
  • Post category:Dystonia/Rare Disease

We all know what it’s like to have a bad day, a bad week, or even a bad year. But the thing is, with time, things usually work out; life…

Continue Reading How To Be A True Hero Despite Living With Rare a Disease

How a Walk in the Zoo Helped Two Little Girls with Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:October 6, 2015
  • Post category:Dystonia/Rare Disease

For parents of children with dystonia, that frustration is a horrible, ongoing reality. Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia…

Continue Reading How a Walk in the Zoo Helped Two Little Girls with Dystonia
This Mom’s Heart Will Make You Want to Act
Pixabay

This Mom’s Heart Will Make You Want to Act

  • Post author:Patient Worthy Contributor
  • Post published:September 25, 2015
  • Post category:Dystonia/Rare Disease

It's September! You know what that means? Happy "Dystonia Awareness Month!" Maybe "Happy" is the wrong word... Because, while spreading awareness is always something to cheer about, dystonia is not. Here…

Continue Reading This Mom’s Heart Will Make You Want to Act

Learn why this Viral Message is so Important

  • Post author:Rebekah
  • Post published:September 22, 2015
  • Post category:Dystonia/Rare Disease

Meet Brittany! Brittany was disheartened after going to a restaurant and having the waitress completely ignore her when Dystonia made it difficult for her to enunciate. After first relocating to…

Continue Reading Learn why this Viral Message is so Important
#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…

Continue Reading #DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia
Join Us To Make September Dystonia Awareness Month!

Join Us To Make September Dystonia Awareness Month!

  • Post author:Patient Worthy Contributor
  • Post published:September 1, 2015
  • Post category:Dystonia/Rare Disease

Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…

Continue Reading Join Us To Make September Dystonia Awareness Month!
  • Go to the previous page
  • 1
  • 2
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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