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: March 11, 2016

  1. Home>
  2. 2016>
  3. March>
  4. 11
The Good, the Bad, and the Ridiculous Part 2

The Good, the Bad, and the Ridiculous Part 2

  • Post author:Patient Worthy Contributor
  • Post published:March 11, 2016
  • Post category:Rare Disease/Timely

Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…

Continue Reading The Good, the Bad, and the Ridiculous Part 2
Editor’s Choice: Morgue Nightmare and D-Day

Editor’s Choice: Morgue Nightmare and D-Day

  • Post author:Patient Worthy Contributor
  • Post published:March 11, 2016
  • Post category:Lyme Disease/Narcolepsy/POTS/Rare Disease

Welcome to this week's Editor's Choice! You won't believe this woman's story of waking up in a morgue because her rare disease wasn't recognized. And one of PW's contributors finally gets a…

Continue Reading Editor’s Choice: Morgue Nightmare and D-Day
CVID Scholarship: Everything You Need to Know to Make Bank

CVID Scholarship: Everything You Need to Know to Make Bank

  • Post author:Kiki Jones
  • Post published:March 11, 2016
  • Post category:CGD/CVID/Primary Immunodeficiencies/SCID

It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…

Continue Reading CVID Scholarship: Everything You Need to Know to Make Bank
Will There Ever Be a Cure for Narcolepsy?

Will There Ever Be a Cure for Narcolepsy?

  • Post author:James Ernest Cassady
  • Post published:March 11, 2016
  • Post category:Narcolepsy/Rare Disease

As most people with narcolepsy are probably aware, current treatments are designed to help manage symptoms rather than treating the underlying cause of the condition itself. Recent advancements, however, have pinpointed…

Continue Reading Will There Ever Be a Cure for Narcolepsy?
Who Needs a Miracle For That Straitjacket Feeling?

Who Needs a Miracle For That Straitjacket Feeling?

  • Post author:EmpatheticBadass
  • Post published:March 11, 2016
  • Post category:Dystonia/Rare Disease

Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…

Continue Reading Who Needs a Miracle For That Straitjacket Feeling?

Esto es lo que necesitas saber para estar informado sobre la sarcoidosis

  • Post author:Patient Worthy Contributor
  • Post published:March 11, 2016
  • Post category:Rare Disease/Sarcoidosis

Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente en lo atinente a las pruebas de diagnóstico / pronóstico. Lo que pasa con…

Continue Reading Esto es lo que necesitas saber para estar informado sobre la sarcoidosis

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