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

Daily Archives: June 29, 2015

  1. Home>
  2. 2015>
  3. June>
  4. 29
Triumphant CVID Survivor Puts the “L” & “E” in IV
Erin shown during one of her IV treatments. Source:CNN

Triumphant CVID Survivor Puts the “L” & “E” in IV

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2015
  • Post category:CVID/Rare Disease

Erin can't recall a time in her life when she wasn't sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections,…

Continue Reading Triumphant CVID Survivor Puts the “L” & “E” in IV

Would You Volunteer to Break Your Legs? This Kid Did!

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2015
  • Post category:Cystinosis/Rare Disease

You know those commercials, "What would you do for a Klondike bar?" Think about that, but instead of getting ice cream you get to play baseball. What would you do? Highschooler…

Continue Reading Would You Volunteer to Break Your Legs? This Kid Did!
Learn How to Defy the Odds from this Cystonosis Mother

Learn How to Defy the Odds from this Cystonosis Mother

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2015
  • Post category:Cystinosis/Rare Disease

Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During…

Continue Reading Learn How to Defy the Odds from this Cystonosis Mother
How to be 100% Devoted Through Sickness and Health

How to be 100% Devoted Through Sickness and Health

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2015
  • Post category:CVID/Rare Disease

Julia Domenick has spent nearly five years caring for her husband Andrew "Drew" after he suddenly became ill. "Drew just had his 50th birthday in rehab! We never thought that he…

Continue Reading How to be 100% Devoted Through Sickness and Health

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