Avacopan, a novel oral therapy for antineutrophil cytoplasmic antibody-associated vasculitis (ANCA-AAV), has changed treatment paradigms for this rare but serious disease. However, until now, a
I am a caregiver to my wonderful husband, Bryan. Our journey began at a rapid pace after a trip to the ER and a CT
Editor’s Note: Patient Worthy is honored to bring you this article from our friends at the Tess Research Foundation. To see the article in its
Neurofibromatosis Type 1 (NF1) is a genetic disorder diagnosed primarily through a set of clinical criteria established by the National Institutes of Health (NIH). Typically,
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
Editor’s Note: Patient Worthy is honored to bring you this article, shared with us by our friends at the Tess Research Foundation. To see this
In the heart of south Wales, a small but growing community is grappling with the devastating impact of Dentatorubral-pallidoluysian atrophy (DRPLA), a rare inherited neurological
Editor’s Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the original article, please click here.
An estimated 47% of infants have some form of plagiocephaly (a flat spot on the head), and up to 10% will eventually need a corrective helmet to
Assertio Holdings has announced the results of the first real-world evidence study evaluating patient experience with SYMPAZAN® (clobazam) oral film, presented at the 150th Annual
In the spring of 2013, as a Creative Writing Major, for my senior thesis I got to write any type of creative piece of my
aTyr Pharma suffered a major setback on September 15, 2025, as its stock price plummeted more than 80% following disappointing results from a pivotal Phase
In a breakthrough study, scientists have uncovered a surprising ally in the fight against cancer: the bacteria living within tumors. According to World Pharma News,
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
A newly developed assessment method that brings together a blood-based measurement and a physical body metric is showing promise for forecasting both survival chances and
Medetoidine is an animal sedative increasingly being found in human opioid deaths according to published reports in the journal “The Conversation” and shared on MedicalXpress. Synthetic
Dewpoint Therapeutics, a U.S.-based biotechnology innovator, has announced the successful closure of its Series D financing round. As reported by thepharmaletter, Dewpoint Therapeutics is renowned
Editor’s Note: Patient Worthy is proud to share this story from our friends at No Stomach for Cancer. To see the article in its original
Mayo Clinic has hosted it's first "undiagnosed hack-a-thon," gathering medical professionals and AI specialists from around the world to help diagnose patients with mysterious symptoms who have yet to receive a diagnosis. Read more here:
patientworthy.com
Cracking the Code: Mayo Clinic Hosts First U.S. “Undiagnosed Hackathon” to Solve Rare Medical Mysteries Post author:Bree Clare Post published:September 25, 2025 Post category:Rare Disease On Sunda...
September 25th is #WorldLungDay, a reminder that every breath matters. 🫁
Let’s stand together for lung health and patient advocacy, and take steps to protect our lungs every day:
✅ Avoid smoking and secondhand smoke
✅ Stay active with regular exercise
✅ Wear masks in polluted or dusty environments
✅ Support clean air initiatives in your community
✅ Listen to and uplift the voices of those living with lung conditions
Healthy lungs mean a healthier life. Let’s breathe better, together. #LungHealth #BreatheBetter #PatientWorthy
#ShareYourStory with us here: bit.ly/4dV7gru
Forzinity has gotten FDA approval, resulting in a landmark breakthrough for patients living with Barth syndrome. Read more here:
Forzinity Approved: A Historic Breakthrough for Barth Syndrome Patients – Patient Worthy
patientworthy.com
Forzinity Approved: A Historic Breakthrough for Barth Syndrome Patients Post author:Bree Clare Post published:September 25, 2025 Post category:Barth Syndrome After years of determined advocacy and sci...
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