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: June 13, 2016

  1. Home>
  2. 2016>
  3. June>
  4. 13
Let’s Hear It For The #Raredads

Let’s Hear It For The #Raredads

  • Post author:Kristen Lord
  • Post published:June 13, 2016
  • Post category:Rare Disease

If you know or are a rare dad who is the parent of a child with a rare disease, or are a rare dad who has a rare disease, tell your story! Shed…

Continue Reading Let’s Hear It For The #Raredads
What Can You Do About High Cortisol levels?
Pixabay

What Can You Do About High Cortisol levels?

  • Post author:Patient Worthy Contributor
  • Post published:June 13, 2016
  • Post category:Cushing Disease/Rare Disease

Living with Cushing's Disease: How Healthy Eating and Exercise Will Help Cushing's disease is a condition that occurs when there is a high amount of cortisol in your blood. This level…

Continue Reading What Can You Do About High Cortisol levels?
Practical Info About PI Disorders

Practical Info About PI Disorders

  • Post author:PW Blogger
  • Post published:June 13, 2016
  • Post category:CGD/CVID/Primary Immunodeficiencies/Rare Disease/SCID

There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…

Continue Reading Practical Info About PI Disorders
How to Explain Your Rare Disease to a New Doctor

How to Explain Your Rare Disease to a New Doctor

  • Post author:PW Blogger
  • Post published:June 13, 2016
  • Post category:Behçet's/Rare Disease

Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist. Sometimes it seems like you are explaining yourself and Behcet's…

Continue Reading How to Explain Your Rare Disease to a New Doctor
Myasthenia Gravis: What You need to Know

Myasthenia Gravis: What You need to Know

  • Post author:PW Blogger
  • Post published:June 13, 2016
  • Post category:Myasthenia Gravis

Myasthenia gravis is an autoimmune disease of the neuromuscular system, causing muscle weakness in the voluntary muscles of your body. While the causes of myasthenia gravis aren't always understood, it is…

Continue Reading Myasthenia Gravis: What You need to Know
How To Have “Wild” Nights With Behçet’s Disease

How To Have “Wild” Nights With Behçet’s Disease

  • Post author:Farrah Fontaine
  • Post published:June 13, 2016
  • Post category:Behçet's/Rare Disease

When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…

Continue Reading How To Have “Wild” Nights With Behçet’s Disease
bebés diminutos y la espondilitis anquilosante: un estudio en la UE

bebés diminutos y la espondilitis anquilosante: un estudio en la UE

  • Post author:Patient Worthy Contributor
  • Post published:June 13, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

La espondilitis anquilosante (A. S. por sus siglas en ingles) es una forma de artritis que afecta a la columna, aunque otras articulaciones pueden participar. Que causa inflamación de las…

Continue Reading bebés diminutos y la espondilitis anquilosante: un estudio en la UE

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