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

Daily Archives: February 26, 2016

  1. Home>
  2. 2016>
  3. February>
  4. 26
Si alguna vez has querido renunciar, este licenciado con FCAS tiene un mensaje para ti

Si alguna vez has querido renunciar, este licenciado con FCAS tiene un mensaje para ti

  • Post author:Patient Worthy Contributor
  • Post published:February 26, 2016
  • Post category:CAPS/FCAS/Rare Disease

Aaron es un graduado de la universidad de veinticuatro años de edad que vive en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…

Continue Reading Si alguna vez has querido renunciar, este licenciado con FCAS tiene un mensaje para ti
Editor’s Choice: Pot, POTS and Virginia’s Awesome Lyme Legislation

Editor’s Choice: Pot, POTS and Virginia’s Awesome Lyme Legislation

  • Post author:Patient Worthy Contributor
  • Post published:February 26, 2016
  • Post category:Ehlers-Danlos Syndrome/Lyme Disease/POTS/Rare Disease/Tyrosinemia

Did you guys know Rare Disease Week is next week? Come participate with us! This week however, we wanted to address some rare diseases of our own: Lyme and POTS. Though POTS…

Continue Reading Editor’s Choice: Pot, POTS and Virginia’s Awesome Lyme Legislation
How Do I Help My Baby With Tyrosinemia?

How Do I Help My Baby With Tyrosinemia?

  • Post author:Ronald Ledsen
  • Post published:February 26, 2016
  • Post category:Rare Disease/Tyrosinemia

Let’s say for a moment that you’re a new parent. First things first: Congratulations, we’re so happy for you! Now, let’s also say that hidden among all the tests and…

Continue Reading How Do I Help My Baby With Tyrosinemia?
Breaking Down the Best Advice from This Cystic Fibrosis Resource

Breaking Down the Best Advice from This Cystic Fibrosis Resource

  • Post author:James Ernest Cassady
  • Post published:February 26, 2016
  • Post category:Cystic Fibrosis

The Cystic Fibrosis Foundation is an incredible resource for anyone living with the condition. Recently, they put together advice to help those living with CF manage their treatment plans. Among the highlights: If…

Continue Reading Breaking Down the Best Advice from This Cystic Fibrosis Resource
Know Your Employment Rights: Narcolepsy is a Covered Condition

Know Your Employment Rights: Narcolepsy is a Covered Condition

  • Post author:Erica Zahn
  • Post published:February 26, 2016
  • Post category:Narcolepsy/Rare Disease

All of us have been there: you're at work and an important deadline is coming up--your boss is breathing down your neck, and your co-workers are micro-managing the project. It's…

Continue Reading Know Your Employment Rights: Narcolepsy is a Covered Condition

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

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