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

Daily Archives: January 29, 2016

  1. Home>
  2. 2016>
  3. January>
  4. 29
Editor’s Choice: Heart Failure, “Escaping” Teens and more!

Editor’s Choice: Heart Failure, “Escaping” Teens and more!

  • Post author:Patient Worthy Contributor
  • Post published:January 29, 2016
  • Post category:CAPS/Dystonia/Narcolepsy/Rare Disease

You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…

Continue Reading Editor’s Choice: Heart Failure, “Escaping” Teens and more!
How a Snowflake Builds a Snowman Family, Part 1

How a Snowflake Builds a Snowman Family, Part 1

  • Post author:Patient Worthy Contributor
  • Post published:January 29, 2016
  • Post category:Myasthenia Gravis/Rare Disease

If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know: 1. They call us Snowflakes because none of our symptoms are…

Continue Reading How a Snowflake Builds a Snowman Family, Part 1
Inspiring Art Shares Unique Perspective On Cystinosis

Inspiring Art Shares Unique Perspective On Cystinosis

  • Post author:Ronald Ledsen
  • Post published:January 29, 2016
  • Post category:Cystinosis/Rare Disease

I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…

Continue Reading Inspiring Art Shares Unique Perspective On Cystinosis
Novartis Busts a CAP(S) in the Ass of Ignorance

Novartis Busts a CAP(S) in the Ass of Ignorance

  • Post author:Ronald Ledsen
  • Post published:January 29, 2016
  • Post category:CAPS/Rare Disease

We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…

Continue Reading Novartis Busts a CAP(S) in the Ass of Ignorance
Conozcamos a Lisa D.: Mi Vida en las tinieblas con Miastenia Gravis

Conozcamos a Lisa D.: Mi Vida en las tinieblas con Miastenia Gravis

  • Post author:Patient Worthy Contributor
  • Post published:January 29, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…

Continue Reading Conozcamos a Lisa D.: Mi Vida en las tinieblas con Miastenia Gravis
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