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 27, 2023

  1. Home>
  2. 2023>
  3. February>
  4. 27
First Pediatric Patient Enrolled in Leniolisib Trial for APDS
https://unsplash.com/photos/_jbClosDsD4

First Pediatric Patient Enrolled in Leniolisib Trial for APDS

  • Post author:Jessica Lynn
  • Post published:February 27, 2023
  • Post category:Activated PI3K delta syndrome

Clinical trials can play a crucial role in understanding diseases, as well as identifying potential therapeutic options. This is especially important in newly identified or poorly understood conditions such as…

Continue Reading First Pediatric Patient Enrolled in Leniolisib Trial for APDS
Study of the Week: Pulmonary Microbiota is Significantly Less Diverse in People with Sarcoidosis
source: pixabay.com

Study of the Week: Pulmonary Microbiota is Significantly Less Diverse in People with Sarcoidosis

  • Post author:James Moore
  • Post published:February 27, 2023
  • Post category:Sarcoidosis

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…

Continue Reading Study of the Week: Pulmonary Microbiota is Significantly Less Diverse in People with Sarcoidosis
Metformin Improved Cognition in Mice Models of Rett Syndrome
Source: Pixabay

Metformin Improved Cognition in Mice Models of Rett Syndrome

  • Post author:Jessica Lynn
  • Post published:February 27, 2023
  • Post category:Rett Syndrome

Prior studies have suggested that metformin, often used as a first-line treatment for people with type 2 diabetes (T2D0, could confer benefits for Rett syndrome. In particular, prior studies found…

Continue Reading Metformin Improved Cognition in Mice Models of Rett Syndrome
Teen Who Survived Pediatric Rhabdomyosarcoma Will Captain Scotland’s Cheer Team
Source: Pixabay.com

Teen Who Survived Pediatric Rhabdomyosarcoma Will Captain Scotland’s Cheer Team

  • Post author:Jessica Lynn
  • Post published:February 27, 2023
  • Post category:Rhabdomyosarcoma- embryonal

Summer Wroniecki fell in love with dancing at a young age. At just 2.5 years old, she was already taking over the dance floor at Highland Dancing; her teachers were…

Continue Reading Teen Who Survived Pediatric Rhabdomyosarcoma Will Captain Scotland’s Cheer Team
ICYMI: Having PCOS Could Raise Your Pancreatic Cancer Risk
source: pixabay.com

ICYMI: Having PCOS Could Raise Your Pancreatic Cancer Risk

  • Post author:Jessica Lynn
  • Post published:February 27, 2023
  • Post category:Pancreatic Cancer/Polycystic Ovary Syndrome

  In the past, research has found connections between polycystic ovary syndrome (PCOS) and pancreatic cancer. For example, one study suggested that having PCOS could increase pancreatic cancer risk by…

Continue Reading ICYMI: Having PCOS Could Raise Your Pancreatic Cancer Risk
Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 2)
Photo courtesy of Tracy Kyttle

Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 2)

  • Post author:Jessica Lynn
  • Post published:February 27, 2023
  • Post category:mastocytosis/Systemic mastocytosis

Before you read on, make sure to check out Part 1 of Tracy's story. In Part 1, Tracy discusses the symptoms that led her to pursue a diagnosis and the multi-year diagnostic…

Continue Reading Living with Systemic Mastocytosis: How Tracy Dares to be Rare (Pt. 2)
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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