
From Denial to Balance: My Journey with Lupus
Looking back, the signs were there long before I was diagnosed with lupus. As a child, I struggled with gastrointestinal issues and a variety of

Looking back, the signs were there long before I was diagnosed with lupus. As a child, I struggled with gastrointestinal issues and a variety of

Imagine being able to turn down the dial on severe pain without taking a single pill or undergoing surgery. Scientists in the UK have just

Editor’s Note: Patient Worthy is honored to present this story, shared with us by our friends at The Mast Cell Disease Society. To see the

By Dr. Avishek Kumar When someone hears there may finally be a breakthrough for pancreatic cancer, the natural reaction is hope. In clinic, however, I

1. A Physical Smoking Gun in the Heart-Brain Connection When people experience cognitive problems, mood drops, or chronic anxiety after surviving a heart attack, the

As reported on PharmaBiz, Infex Therapeutics has announced encouraging results from a phase IIa clinical study of RESP‑X, an investigational monoclonal antibody being developed for

As reported on FiercePharma, Cingulate Therapeutics has encountered a regulatory setback in its effort to bring its lead attention-deficit/hyperactivity disorder (ADHD) therapy to market, after

Editor’s Note: This article was originally written by Joanne Huff, and shared with us by our friends at the Courageous Parents Network. To see the

As reported on PharmaBiz, new findings from the phase 2 ElevAATe trial suggest that the investigational agent efdoralprin alfa may represent a meaningful advance in

As reported on Beckers Hospital Review, the U.S. Food and Drug Administration has authorized ensitrelvir (brand name Xocova) as the first oral antiviral indicated for

To this day, I still don’t remember the car accident that changed my life. It was Thursday, August 8, 2024 — a day like any

As reported on BioSpace, the U.S. Food and Drug Administration (FDA) has granted priority review to BridgeBio Pharma’s investigational therapy, BBP-418, marking a key regulatory

Formally known as Ebola hemorrhagic fever, Ebola is often fatal in humans. The disease is transmitted through contact made with body fluids or blood of

Editor’s Note: This article was originally written and shared with us by Caleigh Haber. This day hits really close to home for me. I was

As reported by PharmaBiz, Japan’s Ministry of Health, Labour and Welfare (MHLW) has broadened the approved use of GSK’s respiratory syncytial virus (RSV) vaccine, Arexvy,

According to a recent article on PharmaBiz, HAYA Therapeutics has announced the completion of dosing in the first cohort of its phase 1 clinical study

According to a recent article in The Manila Times, Jade Biosciences has begun dosing participants in a Phase 2 clinical study, known as JUNIPER, evaluating

An article from Medscape highlighted recent advances in treatment that are reshaping the clinical approach to epidermolysis bullosa (EB), transitioning care from largely supportive management
Still time to join!Get Moving for GRI is in full swing, and our in person community is growing! We are thrilled to announce a brand new Live Event happening THIS SATURDAY, JUNE 6th in Colorado.
If you want to move alongside other incredible GRI families, check out our full lineup of established Live Events below:
COLORADO (New!) – Hosted by the Page Family this Saturday, June 6. Please contact Jindy at [email protected] for more details.
MASSACHUSETTS – Hosted by the LeBlanc Family on June 13: bit.ly/4dfe5Eu
NEW JERSEY – Hosted by the Ambler Family on June 14: bit.ly/3R0gtaC
NEW SOUTH WALES, AUS - Trek for Amarli hosted by Amarli's Army on Sep 12. Contact Britt at [email protected] for more details.
Whether you are a veteran participant or this is your first time, these amazing host families would love to have you join their crew!
Can’t make it to CO, MA, NJ or AUS?
It’s not too late to host your own informal, local Get Moving for GRI meetup. Contact Brittany at [email protected] and we will help you get it set up.
👉 Register or donate today: bit.ly/4tZzsRl
#GetMovingForGRI #CureGRIN #GRIStrong #RareDiseaseAwareness #CommunitySupport
... See MoreSee Less

Navigating healthcare as a patient can feel like an Olympic event- complex, time-consuming, and full of obstacles.
If navigating healthcare were an Olympic sport, what would you medal in? 🏅
Share your event in the comments 👇
#HealthcareNavigation #patientexperience #HealthcareAccess #HealthEquity #PatientWorthy
... See MoreSee Less
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
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.
What best describes you when it comes to rare disease? (check all that apply)
- OR -
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.