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: June 16, 2015

  1. Home>
  2. 2015>
  3. June>
  4. 16
5 “Patient Worthy” Instagram Users to check out #CVID

5 “Patient Worthy” Instagram Users to check out #CVID

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:CVID/Rare Disease

Living with CVID? Learning to manage? PatientWorthy is looking for you on Instagram if you are living with Common Variable Immunodeficiency Disease, CVID.  #PatientWorthy to share your photos with us! And…

Continue Reading 5 “Patient Worthy” Instagram Users to check out #CVID
What hurts worse than a fastball to the ribs? An A.S. Diagnosis

What hurts worse than a fastball to the ribs? An A.S. Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Living the dream as a future baseball All Star, Franklin Gutiérrez, a.k.a. "Guti" was on top of the world. In 2000 the Cleveland Indians signed amateur free agent Franklin Gutiérrez,…

Continue Reading What hurts worse than a fastball to the ribs? An A.S. Diagnosis

5 Things to Do to Prepare Your HAE Child For School

  • Post author:Rebekah
  • Post published:June 16, 2015
  • Post category:HAE/Rare Disease

Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…

Continue Reading 5 Things to Do to Prepare Your HAE Child For School
Siblings Share Life-Threatening Mystery Disorder- What was it?

Siblings Share Life-Threatening Mystery Disorder- What was it?

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:CVID/Rare Disease

Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…

Continue Reading Siblings Share Life-Threatening Mystery Disorder- What was it?

HAE Triggers: Can you Avoid Them?

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:HAE/Rare Disease

Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…

Continue Reading HAE Triggers: Can you Avoid Them?

82-Year-Old Man With A.S. Walks Again After Surgery

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Doctors at Global Hospitals in Mumbai, India, have achieved a rare feat in spinal surgery. For the first time, an expert team of surgeons performed minimal access spine surgery on…

Continue Reading 82-Year-Old Man With A.S. Walks Again After Surgery

Tiny Babies and Ankylosing Spondylitis: EU Study Released

  • Post author:Patient Worthy Contributor
  • Post published:June 16, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Ankylosing spondylitis (A.S.) is a form of arthritis that affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe,…

Continue Reading Tiny Babies and Ankylosing Spondylitis: EU Study Released

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