• 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: April 21, 2016

Home » Archives for April 21, 2016
Have Behçet’s and Want to Blaze the Trail to New Treatment?
pixabay

Have Behçet’s and Want to Blaze the Trail to New Treatment?

  • Post author:Winnie Nash
  • Post published:April 21, 2016
  • Post category:Behçet's/Rare Disease/Timely

Behçet’s disease. If you’ve never heard of it, it’s a disease that causes blood vessel inflammation. If you have heard of it—or actually have Behçet’s—you’re probably well aware of the resulting…

Continue Reading Have Behçet’s and Want to Blaze the Trail to New Treatment?
Estas historias de AEH harán que desees ver un cambio

Estas historias de AEH harán que desees ver un cambio

  • Post author:Patient Worthy Contributor
  • Post published:April 21, 2016
  • Post category:HAE/Rare Disease

Hay algunas enfermedades locas en el mundo de hoy, y el angioedema hereditario, o AEH, es uno de ellos. Para ver los síntomas en la acción, usted puede tener que…

Continue Reading Estas historias de AEH harán que desees ver un cambio
The Eyes Can Tell a Story: Copper Rings and Sunflower Stars
pixabay

The Eyes Can Tell a Story: Copper Rings and Sunflower Stars

  • Post author:Kathy Devanny
  • Post published:April 21, 2016
  • Post category:Rare Disease/Wilson Disease

Wilson Disease: the rare, autosomal (meaning it occurs in both men and women), recessive (meaning that an individual must inherit one copy of the mutated allele from each parent to…

Continue Reading The Eyes Can Tell a Story: Copper Rings and Sunflower Stars
Find Zebra – Like WebMD, But for Rare Diseases

Find Zebra – Like WebMD, But for Rare Diseases

  • Post author:Patient Worthy Contributor
  • Post published:April 21, 2016
  • Post category:Rare Disease

Have you ever gone to WebMD's symptom checker for a simple pain in your stomach or a weird patch on your skin? I know I have, and more often than…

Continue Reading Find Zebra – Like WebMD, But for Rare Diseases
How to Come to Terms with Your Child’s Diagnosis

How to Come to Terms with Your Child’s Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:April 21, 2016
  • Post category:Primary Immunodeficiencies

You've been wondering for months about your child's random symptoms and pain. Nothing you ever knew about kids and growing up helped you understand what was going on. Even your doctor was…

Continue Reading How to Come to Terms with Your Child’s Diagnosis
3 Shocking Things Can Be Done to Ease Chronic Pain

3 Shocking Things Can Be Done to Ease Chronic Pain

  • Post author:Patient Worthy Contributor
  • Post published:April 21, 2016
  • Post category:Myasthenia Gravis

The human body is still a mystery in so many ways to doctors and scientists. Despite having more knowledge and research to draw from, there are still illnesses that confound researchers and…

Continue Reading 3 Shocking Things Can Be Done to Ease Chronic Pain
Pregnant with Myasthenia Gravis? No Need to Panic

Pregnant with Myasthenia Gravis? No Need to Panic

  • Post author:Patient Worthy Contributor
  • Post published:April 21, 2016
  • Post category:Myasthenia Gravis

Myasthenia gravis (MG) is not exactly a common disease, but it affects young adult women most, so the question of pregnancy matters a lot. If you're noticing any unusual breathing problems,…

Continue Reading Pregnant with Myasthenia Gravis? No Need to Panic

OF INTEREST



Rare Disease Clinical Trials Are Essential to Help Uncover Potential Patient Solutions: Spotlight on Classic Congenital Adrenal Hyperplasia (CAH)

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