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: October 26, 2015

  1. Home>
  2. 2015>
  3. October>
  4. 26
Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!
source: pixabay.com

Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!

  • Post author:Farrah Fontaine
  • Post published:October 26, 2015
  • Post category:Behçet's/Rare Disease

We all have that one relative, who every time they see you, always asks, “So, when are you having kids?” or the mom who is desperate to be a grandmother.…

Continue Reading Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!
Meme Monday: What Halloween Monster is Causing Your Rare Disease?

Meme Monday: What Halloween Monster is Causing Your Rare Disease?

  • Post author:PW Blogger
  • Post published:October 26, 2015
  • Post category:CAPS/CVID/Dystonia/FCAS/Tyrosinemia

Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…

Continue Reading Meme Monday: What Halloween Monster is Causing Your Rare Disease?
Breakthrough! Why You Should Care About FDA HAE Designations

Breakthrough! Why You Should Care About FDA HAE Designations

  • Post author:James Ernest Cassady
  • Post published:October 26, 2015
  • Post category:HAE/Rare Disease

Recently, the FDA gave "breakthrough therapy" status to a potential new drug that may help prevent HAE attacks. But how does that affect you, the patient? What does "breakthrough therapy" really mean?…

Continue Reading Breakthrough! Why You Should Care About FDA HAE Designations
How to Avoid FH Rabbit Holes and Dig the Truth

How to Avoid FH Rabbit Holes and Dig the Truth

  • Post author:Alisha Stone
  • Post published:October 26, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Familial hypercholesterolemia (FH),  a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…

Continue Reading How to Avoid FH Rabbit Holes and Dig the Truth
Wanted: Blood Donors with Big Throbbing Healthy Hearts

Wanted: Blood Donors with Big Throbbing Healthy Hearts

  • Post author:Alisha Stone
  • Post published:October 26, 2015
  • Post category:CGD/CVID/Primary Immunodeficiencies/Rare Disease/SCID

In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…

Continue Reading Wanted: Blood Donors with Big Throbbing Healthy Hearts

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