Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
SHARE YOUR STORY!
  • 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

ted talk

  1. Home>
  2. ted talk

Remembering Claire Wineland, Cystic Fibrosis Advocate 

  • Post author:Jean Martell
  • Post published:September 4, 2018
  • Post category:Cystic Fibrosis

The rare disease advocacy community is mourning the loss of a wonderful voice, Claire Wineland, who passed away Monday after her battle with Cystic Fibrosis. Claire suffered a stroke on Aug…

Continue Reading Remembering Claire Wineland, Cystic Fibrosis Advocate 
Por qué tu enfermedad no te hace victorioso

Por qué tu enfermedad no te hace victorioso

  • Post author:Patient Worthy Contributor
  • Post published:October 22, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

El mundo le gusta una buena historia. Y yo estoy a favor de darle a la gente sus merecidas "felicidades" cuando han enfrentar a la adversidad y logró algo fantástico.…

Continue Reading Por qué tu enfermedad no te hace victorioso

Why Your Disease Doesn’t Make You a Comeback Kid

  • Post author:Patient Worthy Contributor
  • Post published:September 18, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

The world loves a good comeback story. And I am all for giving people their well-deserved “congrats” when they’ve faced down adversity and accomplished something fantastic. Franklin Gutierrez, for example,…

Continue Reading Why Your Disease Doesn’t Make You a Comeback Kid

Featured


Picture of Family


Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

SHARE YOUR STORY!
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