Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
CLICK HERE TO 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: February 15, 2016

  1. Home>
  2. 2016>
  3. February>
  4. 15
How to Not Die from Cystinosis: New Research on Treatments Offer Hope

How to Not Die from Cystinosis: New Research on Treatments Offer Hope

  • Post author:Alisha Stone
  • Post published:February 15, 2016
  • Post category:Cystinosis

The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…

Continue Reading How to Not Die from Cystinosis: New Research on Treatments Offer Hope
POTS: People Oppressed by Treatment Shortages
Pixabay

POTS: People Oppressed by Treatment Shortages

  • Post author:James Ernest Cassady
  • Post published:February 15, 2016
  • Post category:POTS/Rare Disease

Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands.   Here's what you need…

Continue Reading POTS: People Oppressed by Treatment Shortages
How Do You Make Dystonia Disappear? Madonna!

How Do You Make Dystonia Disappear? Madonna!

  • Post author:James Ernest Cassady
  • Post published:February 15, 2016
  • Post category:Dystonia/Rare Disease

When all else fails and you long to be Something better than you are today I know a place where you can get away It's called a dance floor, and…

Continue Reading How Do You Make Dystonia Disappear? Madonna!
How To Save Your Life When Caring For Muscular Dystrophy

How To Save Your Life When Caring For Muscular Dystrophy

  • Post author:Alisha Stone
  • Post published:February 15, 2016
  • Post category:Duchenne Muscular Dystrophy

It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to…

Continue Reading How To Save Your Life When Caring For Muscular Dystrophy
Conozcamos a Oakley: Un niño pequeño con enorme valentia

Conozcamos a Oakley: Un niño pequeño con enorme valentia

  • Post author:Patient Worthy Contributor
  • Post published:February 15, 2016
  • Post category:Rare Disease

Este es mi hijo Oakley, un niño de cinco años de edad con una sonrisa adorable, que ama a las Tortugas Ninja, y usted nunca adivinar lo que hemos pasado.…

Continue Reading Conozcamos a Oakley: Un niño pequeño con enorme valentia
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)
CLICK HERE TO 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