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

primary immunodeficiencies

  1. Home>
  2. primary immunodeficiencies>
  3. Page 2
A Dangerous Consequence of the 21st Century Cures Act
https://pixabay.com/en/united-states-capitol-politics-1675539/

A Dangerous Consequence of the 21st Century Cures Act

  • Post author:Patient Worthy Contributor
  • Post published:March 14, 2017
  • Post category:Primary Immunodeficiencies

We are huge proponents of the 21st Century Cures Act, as it does so much for the rare community. However, there has been an unintended consequence of it's 2016 passing…

Continue Reading A Dangerous Consequence of the 21st Century Cures Act
Esta pintura es mortal. Lo que necesitas saber.
Free-Photos / Pixabay

Esta pintura es mortal. Lo que necesitas saber.

  • Post author:Patient Worthy Contributor
  • Post published:January 13, 2017
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Los hospitales son el germen de postrado, lugares infestados de bacterias. -especialmente las infecciones adquiridas en los hospitales infecciones por estafilococos, son conocidos por ser una causa principal de muerte…

Continue Reading Esta pintura es mortal. Lo que necesitas saber.
How to Learn More About PI and Women
Pixabay

How to Learn More About PI and Women

  • Post author:EmpatheticBadass
  • Post published:May 9, 2016
  • Post category:Primary Immunodeficiencies/Rare Disease/Timely

The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…

Continue Reading How to Learn More About PI and Women

This Paint Is Deadly. What You Need to Know.

  • Post author:EmpatheticBadass
  • Post published:November 11, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Hospitals are germ-ridden, bacteria-infested places. Hospital-acquired infections—especially staph infections—are known to be a leading cause of death among hospitalized patients. For those of us with immune systems compromised by chronic illnesses…

Continue Reading This Paint Is Deadly. What You Need to Know.
What These Twin Girls with PI Have Done Will Blow Your Mind

What These Twin Girls with PI Have Done Will Blow Your Mind

  • Post author:PW Blogger
  • Post published:October 28, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…

Continue Reading What These Twin Girls with PI Have Done Will Blow Your Mind
  • Go to the previous page
  • 1
  • 2
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