Parkinson's Disease
Claudine’s Journey with Parkinson’s Disease
What is Parkinson’s Disease – known as PD for short? Parkinson’s Disease was first discovered in 1817 by a British doctor named James Parkinson. From
Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First
- June 4, 2026
Heart Attacks and Your Brain
Infex Therapeutics Reports Positive Phase IIa Data for RESP‑X in Bronchiectasis Patients with Pseudomonas Colonisation
Cingulate Receives FDA Complete Response Letter for ADHD Candidate Over Manufacturing Issues
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Bipolar disorder
The Prevalence of Tick Infections in Pediatric Bipolar Disorders
A recent article by Dr. Rosalie Greenberg explores the possible relationship of infections caused by ticks and psychiatric conditions in children, including PANS or PANDA
Epidermolysis Bullosa
Expanding Hope for Rare Skin Disease: CHOP Becomes Sixth Treatment Center for Revolutionary ZEVASKYN Gene Therapy
Abeona Therapeutics Inc. has announced a significant expansion in access to ZEVASKYN, marking the activation of Children’s Hospital of Philadelphia (CHOP) as the sixth Qualified
Duchenne Muscular Dystrophy
Regenxbio Reports Positive Pivotal Data for Gene Therapy RGX-202 in Duchenne Muscular Dystrophy
As reported on PharmaBiz, Regenxbio has announced encouraging topline findings from the pivotal Phase III portion of its ongoing AFFINITY DUCHENNE clinical program evaluating RGX-202,
Sickle Cell Disease
Canadian Biotech Biossil Identifying Potentially Overlooked Drug Candidates
Biossil, based in Toronto and co-founded by Dr. Alexander Mosa (Chair, CSO and co-founder) and Anthony Mouchantaf (CEO and co-founder), is making headway for rare
Rare Disease
Poolbeg Pharma Expands Global IP Position with Canadian Patent for POLB 001 in CRS
As reported on PharmaTimes, Poolbeg Pharma has secured a Canadian patent protecting the use of p38 MAPK inhibitors, including its lead candidate POLB 001, for preventing
Rare Disease
How to Advocate for Yourself During Appointments
Editor’s Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. She waited an hour and fifteen minutes to
Rare Disease
GLP-1–Based Therapies Linked to Reduced Risk of Sleep Apnea in Obesity
As reported on Healio, emerging real-world evidence suggests that glucagon-like peptide-1 (GLP-1) receptor agonists—and related dual agonists—may play a significant role in lowering the risk
Leukodystrophy
Connor’s Leukodystrophy Story
I remember the day I realized something was wrong, as clearly as if it happened this past weekend. It was a beautiful morning in June.
Lupus
The Quiet Revolution: When Hospitals Stop Being Your Second Home
Systemic lupus erythematosus punishes patients twice. First comes the disease itself, an autoimmune disorder where the body attacks its own tissues, causing debilitating fatigue, joint
Cholangiocarcinoma
FDA Expands Approval of Bizengri for Ultra-Rare Cholangiocarcinoma Subset
As reported on BioSpace, the U.S. Food and Drug Administration (FDA) has approved Partner Therapeutics’ bispecific antibody Bizengri for adults with cholangiocarcinoma harboring an NRG1
Rare Disease
In Rare Disease Care, Coordination Should Be Common
Editor’s Note: Patient Worthy is honored to share this submission from Katie DiLorenzo, SVP, Patient and Pharmacy Services, PANTHERx® Rare. If you’re living with a
Epidermolysis Bullosa
Solving Cell Therapy’s Dirty Secret: How One Partnership Could Unlock Consistent Treatments
Mesenchymal stromal cells (MSCs) have tantalized the medical world for years. These versatile immune-modulating cells offer genuine hope for diseases ranging from epidermolysis bullosa, a
Cancer
Nutrition and Cancer 101 – The Basics
Patient Worthy is honored to reprint this selection from The Cancer Dietitian, by Julie Lanford MPH, RD, CSO, LDN. It’s important to know that no single
Crohn's disease
Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More
I am sharing my journey to give a voice to patients who suffer from extreme poly-pathology and are often left behind by the medical system.
Colorectal cancer
Pre-Surgery Immunotherapy Rewrites Colorectal Cancer Survival: Zero Recurrence at Three Years
For decades, colorectal cancer treatment has followed the same playbook: surgeons remove the tumor, then patients endure months of chemotherapy hoping to catch any remaining
Parkinson's Disease
AskBio Advances Parkinson’s Gene Therapy Program With Commercial-Scale Manufacturing
AskBio Inc., a gene therapy company operating independently under Bayer AG, has taken a key step forward in the development of its investigational Parkinson’s disease
Lupus
Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story
Editor’s Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. In college, a clinician told me I
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Myasthenia gravis is a chronic autoimmune neuromuscular condition that affects communication between nerves and muscles, often causing muscle weakness that can fluctuate throughout the day.
Awareness helps foster understanding, encourages earlier recognition of symptoms, supports research efforts, and reminds those living with MG that they are not alone in their journey.
This month we honor the strength, resilience, and determination of the MG community while continuing to advocate for education, support, and progress.
#myastheniagravis #autoimmunedisease #PatientWorthy
We're honored and thrilled to bring you this article by Dr. Avishek Kumar, discussing breaking news on how pancreatic cancer treatment has potentially been changed forever. Read here:
bit.ly/4x5u2pX
#PatientWorthy #Cancer #pancreaticcancer #shareyourstory
For many people living with rare neurological or nerve-related conditions, reduced sensation can affect how they experience touch, temperature, pain, or pressure. Symptoms like this may impact daily life in ways that aren’t always visible to others. Raising awareness helps highlight the complex ways rare diseases can affect the nervous system and why recognizing sensory changes can be important for diagnosis, care, and support.
#RareWordOfTheWeek #RareDisease #RareDiseaseAwareness #PatientWorthy
