• 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
Click Here To Share Your Story with Narcolepsy
Click Here to Read Real Stories From Patients And Caregivers
Click Here To Share Your Story With MASH

1529 Search Results Found

You searched for: "study of the week"
  1. Home>
  2. Search results for “study of the week”>
  3. Page 55
“Being Okay” – Kylie’s NF1 Journey

“Being Okay” – Kylie’s NF1 Journey

When we are faced with an obstacle, big or small, we supposedly pick one of two options: to fight it or to run away. Nowadays, they say there are more…

Continue Reading “Being Okay” – Kylie’s NF1 Journey
Alkermes’ Alixorexton Shows Promise in Narcolepsy Type 1: Vibrance-1 Phase 2 Results to Be Unveiled at World Sleep 2025

Alkermes’ Alixorexton Shows Promise in Narcolepsy Type 1: Vibrance-1 Phase 2 Results to Be Unveiled at World Sleep 2025

Alkermes is set to present detailed positive results from its Vibrance-1 Phase 2 study of alixorexton, a novel, once-daily oral orexin 2 receptor agonist, in patients with narcolepsy type 1…

Continue Reading Alkermes’ Alixorexton Shows Promise in Narcolepsy Type 1: Vibrance-1 Phase 2 Results to Be Unveiled at World Sleep 2025
Vincenzo’s Journey with Glanzmann Thrombasthenia

Vincenzo’s Journey with Glanzmann Thrombasthenia

Editor's Note: Patient Worthy is proud to bring you this story from our friends at the Glanzmann Research Foundation. To see the article in its original format, please click here.…

Continue Reading Vincenzo’s Journey with Glanzmann Thrombasthenia
My Diagnosis Didn’t Silence Me, It Lit a Fire

My Diagnosis Didn’t Silence Me, It Lit a Fire

Editor's Note: Patient Worthy is proud to bring you this story-share, originally written by Gwen Pike, founder of the podcast Empowerment in Illness. When I was in my twenties, life was…

Continue Reading My Diagnosis Didn’t Silence Me, It Lit a Fire
Opinion: Use of Basket Trials to Solve Sleep Problems in Patients with Rare Diseases

Opinion: Use of Basket Trials to Solve Sleep Problems in Patients with Rare Diseases

In our third installment from our series of reports provided by our partner TREND Community, we are bringing you several reports that analyze the effects of sleep disorders.  This week…

Continue Reading Opinion: Use of Basket Trials to Solve Sleep Problems in Patients with Rare Diseases
Exercise and Colon Cancer: Can Exercise Reprogram Genes? And Help Colon Cancer Survivors? 

Exercise and Colon Cancer: Can Exercise Reprogram Genes? And Help Colon Cancer Survivors? 

A new study conducted at the Huntsman Cancer Institute in Utah suggests that exercise has a beneficial effect on the body, such as reprogramming, that alters the gene’s function, identity…

Continue Reading Exercise and Colon Cancer: Can Exercise Reprogram Genes? And Help Colon Cancer Survivors? 
Breaking Ground: Palvella Therapeutics Completes Enrollment in Phase 2 TOIVA Trial for QTORIN™ Rapamycin in Cutaneous Venous Malformations

Breaking Ground: Palvella Therapeutics Completes Enrollment in Phase 2 TOIVA Trial for QTORIN™ Rapamycin in Cutaneous Venous Malformations

Palvella Therapeutics, Inc. has announced a key milestone in the development of therapies for rare genetic skin diseases: the completion of enrollment in its Phase 2 TOIVA trial of QTORIN™…

Continue Reading Breaking Ground: Palvella Therapeutics Completes Enrollment in Phase 2 TOIVA Trial for QTORIN™ Rapamycin in Cutaneous Venous Malformations
Diagnosis and management of sleep disorders in Prader-Willi syndrome

Diagnosis and management of sleep disorders in Prader-Willi syndrome

In our third installment from our series of reports provided by our partner TREND Community, we are bringing you several reports that analyze the effects of sleep disorders.  This week…

Continue Reading Diagnosis and management of sleep disorders in Prader-Willi syndrome
  • Go to the previous page
  • 1
  • …
  • 52
  • 53
  • 54
  • 55
  • 56
  • 57
  • 58
  • …
  • 192
  • Go to the next page
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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