My story began before I was old enough to understand it. Childhood cancer shaped my body and my life long before I had words for
CAR-NKT cell therapy (NKT) is capable of precision targeting when equipped with CAR. The UCLA study’s co-senior author, Dr. Lili Yang stated that personalized immunotherapies
Cabaletta Bio has announced significant progress in its development of chimeric autoantibody receptor T cell (CAAR-T) therapies, marking a major milestone with the initiation of
After being diagnosed with a rare disease or any other chronic health condition (in my case I have dystonia) and learning it is not a
Editor’s Note: Patient Worthy is proud to share part 10 of 10 of Elena Genik’s blog, detailing her journey with Graves disease and thyroid eye
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did
Ever since Celine Dion, the popular superstar, announced the cancellation of her 2023 tour due to a diagnosis of Stiff Person Syndrome, or SPS, the
Elevar Therapeutics has achieved a significant regulatory milestone with the US Food and Drug Administration’s acceptance of a resubmitted New Drug Application for rivoceranib in
Sharing My Stripes 🦓 This Rare Disease Month, I’m honored to share my journey living as someone with a rare disease and what Rare Disease
Editor’s Note: Patient Worthy is honored to share part 9 of 10 of Elena Genik’s blog documenting her experiences with Graves disease and thyroid eye
When patients and families face a life-or-death disease, bureaucracy often feels like the enemy. Yet in early February 2026, the FDA delivered something rare: a
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12
Editor’s Note: Patient Worthy is pleased to share this article, submitted to us by George Simpson, who volunteers for the CMT Research Foundation. There are
Primary biliary cholangitis (PBC) represents a chronic, progressive autoimmune liver disease characterized by the destruction of small bile ducts, leading to cholestasis and potentially fatal
Editor’s Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye
Otsuka has launched an ambitious awareness initiative designed to fundamentally shift how healthcare professionals understand and approach attention-deficit/hyperactivity disorder (ADHD). As reported by FiercePharma.com, the
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe
For many people living with a rare disease, symptoms don’t always follow a straight path. Periods of stability or improvement can sometimes be followed by the return or worsening of symptoms, bringing new uncertainty and challenges. Understanding these patterns is an important part of recognizing how complex rare diseases can be and why ongoing awareness, research, and support are so important.
#RareWordOfTheWeek #RareDisease #RareDiseaseAwareness #PatientWorthy
We had the pleasure of meeting Monica and Kendall at Rare Disease Week in DC! At the young age of 2 Kendall started showing painful signs of Myasthenia Gravis (MG). She was given a life changing diagnoses of MG at the age of three. Kendall is an amazing, strong, and brave young advocate. Kendall was one of the youth advocates that spoke to the members of congress for change. It was inspiring to meet and hear the voice of such a young advocate looking for change. Thank you for taking the time to chat with us. We look forward to seeing more amazing advocacy work from you in the future. Keep shining we see you!
#raredc2026 #RareDiseaseWeek #PatientWorthy #MG #myastheniagravis
Have you been impacted by Tardive Dyskinesia? Patient Worthy is looking for personal stories to help others feel supported and inspired. Your experience could make a meaningful difference! Share your patient journey with us here: bit.ly/4dV7gru
#tardivedyskinesia #TD #yourstorymatters #shareyourstory #PatientWorthy
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