• Rare Disease News
  • [email protected]
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

Daily Archives: August 18, 2022

Home » Archives for August 18, 2022
Four Young Patients Plus Popular Antibiotic Equals Lung Collapse

Four Young Patients Plus Popular Antibiotic Equals Lung Collapse

  • Post author:Rose Duesterwald
  • Post published:August 18, 2022
  • Post category:Rare Disease

Six years after receiving a lung transplant a young woman 21 years of age noticed an article in Reforestemos Patagonia © about another young woman who was waiting for a…

Continue Reading Four Young Patients Plus Popular Antibiotic Equals Lung Collapse
Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin
source: unsplash.com

Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin

  • Post author:Rose Duesterwald
  • Post published:August 18, 2022
  • Post category:Rare Disease

  Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…

Continue Reading Compassion Corner: Compassion and Physician Burnout. The Other Side of the Coin
ABX1100 for Pompe Disease Earns Orphan Drug Designation
Photo by Ben White on Unsplash: https://unsplash.com/photos/lVCHfXn3VME

ABX1100 for Pompe Disease Earns Orphan Drug Designation

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Pompe Disease

In the United States, Orphan Drug designation is a special status granted to drugs or biologics intending to treat, prevent, or diagnose a rare disease or condition. A "rare" condition…

Continue Reading ABX1100 for Pompe Disease Earns Orphan Drug Designation
Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)
Photo courtesy of Ankona "Mo" Das

Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Multiple Sclerosis

For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and…

Continue Reading Changing the Perspective on Multiple Sclerosis: Mo’s Story (Pt. 1)
First Patient Dosed in Nula-cel Trial for SCD
source: pixabay.com

First Patient Dosed in Nula-cel Trial for SCD

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Sickle Cell Disease

  For those living with sickle cell disease (SCD), treatment and management can sometimes be difficult. Currently, there is no cure for SCD. Patients may manage their condition using antibiotics,…

Continue Reading First Patient Dosed in Nula-cel Trial for SCD
Happy 2nd Birthday to TAPS Support!

Happy 2nd Birthday to TAPS Support!

  • Post author:Jessica Lynn
  • Post published:August 18, 2022
  • Post category:Twin anemia polycythemia sequence

Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…

Continue Reading Happy 2nd Birthday to TAPS Support!

OF INTEREST


XLH Image


X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition


podcast setup on a desk


Catalyst’s LEMS Aware Podcast Helps Connect Patients

Patient Stories

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