• Rare Disease News
  • contribute@patientworthy.com
Facebook-f Instagram Linkedin-in Pinterest Twitter
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
  • Join PW

Daily Archives: August 3, 2016

Home » Archives for August 3, 2016
When PD Makes You Crazy, Swallow THIS

When PD Makes You Crazy, Swallow THIS

  • Post author:PW Blogger
  • Post published:August 3, 2016
  • Post category:Parkinson's Disease/Rare Disease

When people hear the word “Parkinson’s disease” (PD), they are likely to conjure an image of trembling and unsteady gait. But Parkinson’s disease has many manifestations that strike individuals unequally…

Continue Reading When PD Makes You Crazy, Swallow THIS
Now is the Best Time in History to Be Born Early!

Now is the Best Time in History to Be Born Early!

  • Post author:Erica Zahn
  • Post published:August 3, 2016
  • Post category:neonatal respiratory distress syndrome/Rare Disease

Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…

Continue Reading Now is the Best Time in History to Be Born Early!
Breathing Should Be The Easy Part. #IPF

Breathing Should Be The Easy Part. #IPF

  • Post author:Kristen Lord
  • Post published:August 3, 2016
  • Post category:IPF/Rare Disease

Life is hard, Breathing should be the easy part. Breathing should be the easiest thing to do in life. It is an automatic body function that we do without thought.…

Continue Reading Breathing Should Be The Easy Part. #IPF
See What Simple Joy They Gave One Little Lennox-Gastaut Boy

See What Simple Joy They Gave One Little Lennox-Gastaut Boy

  • Post author:PW Blogger
  • Post published:August 3, 2016
  • Post category:Lennox-Gastaut syndrome/Rare Disease

Like most little boys, six-year-old Maddox Klossner loves being outside and in constant motion. Maddox has cerebral palsy as well as a form of epilepsy called Lennox-Gastaut Syndrome; both conditions were…

Continue Reading See What Simple Joy They Gave One Little Lennox-Gastaut Boy
5 Things People With Narcolepsy Are Tired of Hearing
Pixabay

5 Things People With Narcolepsy Are Tired of Hearing

  • Post author:Winnie Nash
  • Post published:August 3, 2016
  • Post category:Narcolepsy/Rare Disease

To all the people with narcolepsy out there: how tired are you of having people make light of your condition? The jokes, the playfulness, the jabs—it all gets a little…

Continue Reading 5 Things People With Narcolepsy Are Tired of Hearing
asi es como se siente ver a la ICV fijamente a los ojos y darle un rodillazo en la ingle

asi es como se siente ver a la ICV fijamente a los ojos y darle un rodillazo en la ingle

  • Post author:Patient Worthy Contributor
  • Post published:August 3, 2016
  • Post category:CVID/Rare Disease

Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…

Continue Reading asi es como se siente ver a la ICV fijamente a los ojos y darle un rodillazo en la ingle

OF INTEREST



Research in Treatment Options for Primary Biliary Cholangitis (PBC)

GET INVOLVED

Make a difference, share your experiences and get paid. Opt-in & join Patient Worthy’s panel for paid opportunities such as Surveys, Market Research, Patient Advisory Panels & much more.

JOIN NOW

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

READ MORE

RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

READ MORE
SIGN UP FOR OUR NEWSLETTER
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
Become a Contributor

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 Policy
Privacy Policy for CA Residents
EU Privacy Notice

© Copyright 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