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 1, 2023

  1. Home>
  2. 2023>
  3. February>
  4. 1
Bachelor Australia’s Megan Marx Shares Spinocerebellar Ataxia Diagnosis
source: pixabay.com

Bachelor Australia’s Megan Marx Shares Spinocerebellar Ataxia Diagnosis

  • Post author:Jessica Lynn
  • Post published:February 1, 2023
  • Post category:Spinocerebellar Ataxia

  In the reality television world, Megan Marx is best known for her time on Bachelor Australia, Bachelor in Paradise, and The Challenge Australia. But Marx is about to be…

Continue Reading Bachelor Australia’s Megan Marx Shares Spinocerebellar Ataxia Diagnosis
He has Ultra-Rare UBA5 Disease, but There is Hope for this Little Boy
source: unsplash.com

He has Ultra-Rare UBA5 Disease, but There is Hope for this Little Boy

  • Post author:Rose Duesterwald
  • Post published:February 1, 2023
  • Post category:UBA5 disease

  Little 2 1/2-year-old Raiden Pham cannot walk or talk, but he can smile at his parents and radiate love. The baby’s parents are on a 24/7 schedule caring for…

Continue Reading He has Ultra-Rare UBA5 Disease, but There is Hope for this Little Boy
Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1)
Photo courtesy of Emily Katharine

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1)

  • Post author:Jessica Lynn
  • Post published:February 1, 2023
  • Post category:Stickler Syndrome

Living with a rare genetic disease like Stickler syndrome (Or “Sticklers”) isn’t a death sentence. If Emily Katharine wants people to know one thing, that’s it: that they are more…

Continue Reading Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1)
ICYMI: Positive Topline Data Available on Pemvidutide for NAFLD
Arcaion / Pixabay

ICYMI: Positive Topline Data Available on Pemvidutide for NAFLD

  • Post author:Jessica Lynn
  • Post published:February 1, 2023
  • Post category:Nonalcoholic fatty liver disease

  In a late December 2022 news release from biopharmaceutical company Altimmune, Inc., the company shared that positive topline data was available from a 24-week study—including a 12-week extension—which evaluated…

Continue Reading ICYMI: Positive Topline Data Available on Pemvidutide for NAFLD
A Nurse With CMT is Preparing to Circumnavigate the Globe
source: shutterstock.com

A Nurse With CMT is Preparing to Circumnavigate the Globe

  • Post author:Rose Duesterwald
  • Post published:February 1, 2023
  • Post category:Charcot-Marie-Tooth disease

    Jenny Decker’s disease, Charcot-Marie-Tooth (CMT), is named after the three doctors who first discovered the disease in 1886. CMT is a progressive neurological disease that affects approximately 2.6…

Continue Reading A Nurse With CMT is Preparing to Circumnavigate the Globe
No one has Survived Anti-MDA5 Dermatomyositis but Jason’s Family Hoped he Would be the Exception
source: pixabay.com

No one has Survived Anti-MDA5 Dermatomyositis but Jason’s Family Hoped he Would be the Exception

  • Post author:Rose Duesterwald
  • Post published:February 1, 2023
  • Post category:Dermatomyositis

  Jason Tolson age 30 of Yorkshire, UK had not been diagnosed when he first began to have symptoms in May 2022. Jason began to experience muscle and joint pain…

Continue Reading No one has Survived Anti-MDA5 Dermatomyositis but Jason’s Family Hoped he Would be the Exception

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