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

1459 Search Results Found

You searched for: "study of the week"
  1. Home>
  2. Search results for “study of the week”>
  3. Page 144
Catalysts for Change and Guidance for Growth: Terri’s Story

Catalysts for Change and Guidance for Growth: Terri’s Story

Terri considers herself “very lucky”. In the 80s her paternal grandmother and her grandmother’s two sisters were diagnosed with ovarian cancer. In the 90s, her family entered into the BRCA1…

Continue Reading Catalysts for Change and Guidance for Growth: Terri’s Story
Mystery: A Paralysis That Occurs in Children Every-Other-Year

Mystery: A Paralysis That Occurs in Children Every-Other-Year

The Center for Disease Control (CDC) is urging doctors and researchers to investigate and to collect new data before the disease strikes again. An article in Ars Technica reports that…

Continue Reading Mystery: A Paralysis That Occurs in Children Every-Other-Year
FDA Approves Soliris for Treatment of Neuromyelitis Optica Spectrum Disorder

FDA Approves Soliris for Treatment of Neuromyelitis Optica Spectrum Disorder

According to a publication at Markets Insider, the Food and Drug Administration (FDA) recently approved Soliris (eculizumab) as a treatment for neuromyelitis optica spectrum disorder. The approval marks the first…

Continue Reading FDA Approves Soliris for Treatment of Neuromyelitis Optica Spectrum Disorder
Company Starts up Late Stage Trial Testing Experimental WHIM Syndrome Treatment

Company Starts up Late Stage Trial Testing Experimental WHIM Syndrome Treatment

According to a story from BioPortfolio, the biopharmaceutical company X4 Pharmaceuticals, Inc. has recently initiated a phase 3 clinical trial that is testing its current lead product candidate mavorixafor. This…

Continue Reading Company Starts up Late Stage Trial Testing Experimental WHIM Syndrome Treatment
Early Data Released From Phase 1B Duchenne Muscular Dystrophy Gene Therapy Trial

Early Data Released From Phase 1B Duchenne Muscular Dystrophy Gene Therapy Trial

According to a story from BioPortfolio, the drug company Pfizer has recently presented data from its phase 1b clinical trial that tested the company's experimental gene therapy PF-06939926, which is…

Continue Reading Early Data Released From Phase 1B Duchenne Muscular Dystrophy Gene Therapy Trial
After Being Misdiagnosed for One Year, it Took Six Years to Recover From Lyme Disease

After Being Misdiagnosed for One Year, it Took Six Years to Recover From Lyme Disease

  Kris Newby and her husband were unaware that they both had been bitten by ticks while on vacation on a small ”Vineyard” island. An article that appeared recently in…

Continue Reading After Being Misdiagnosed for One Year, it Took Six Years to Recover From Lyme Disease
Sangamo Updates on Beta Thalassemia, MPS, and Hemophilia Trials

Sangamo Updates on Beta Thalassemia, MPS, and Hemophilia Trials

According to a publication from Fierce Biotech, Biotech company Sangamo recently updated investors on three trials it has underway testing experimental forms of gene and cell therapies. The trials are…

Continue Reading Sangamo Updates on Beta Thalassemia, MPS, and Hemophilia Trials
First Patient Enrolled in Phase 3 Trial for Autosomal Dominant Polycystic Kidney Disease

First Patient Enrolled in Phase 3 Trial for Autosomal Dominant Polycystic Kidney Disease

Do you have ADPKD? If you or someone you know has ADPKD, email us at [email protected]. We'd love to hear from you about your experience! According to a story from…

Continue Reading First Patient Enrolled in Phase 3 Trial for Autosomal Dominant Polycystic Kidney Disease
  • Go to the previous page
  • 1
  • …
  • 141
  • 142
  • 143
  • 144
  • 145
  • 146
  • 147
  • …
  • 183
  • Go to the next page

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