• 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

Refsum Disease

Home » Refsum Disease
Kristie’s Story Part 3:  Global DARE Foundation – Advocating for a Cure

Kristie’s Story Part 3:  Global DARE Foundation – Advocating for a Cure

  • Post author:Rebekah
  • Post published:May 20, 2020
  • Post category:Rare Disease/Refsum Disease

Click here to read part 1 and here to read part 2 After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right…

Continue Reading Kristie’s Story Part 3:  Global DARE Foundation – Advocating for a Cure
Kristie’s Story Part 2:  Adjusting After the Diagnosis

Kristie’s Story Part 2: Adjusting After the Diagnosis

  • Post author:Rebekah
  • Post published:May 19, 2020
  • Post category:Rare Disease/Refsum Disease

To read part 1 click here Kristie’s medical mystery was now solved.  What was the next step?  After speaking with her genetic counselor about her results, Kristie was referred to…

Continue Reading Kristie’s Story Part 2: Adjusting After the Diagnosis
Kristie’s Story Part 1: Journey to a Diagnosis

Kristie’s Story Part 1: Journey to a Diagnosis

  • Post author:Rebekah
  • Post published:May 18, 2020
  • Post category:Rare Disease/Refsum Disease

Kristie DeMarco was an extreme athlete- constantly training for triathlons, ironman races, ice swimming, and open water swimming. She loved to compete in various feats of strength and endurance. Overall,…

Continue Reading Kristie’s Story Part 1: Journey to a Diagnosis

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