Cervical Dystonia
Health Benefits of Putting Feelings to Words
Putting feelings into words does more than help you reflect. Brain imaging research shows it can shift activity inside emotional circuits. If you are someone
Claudine’s Journey with Parkinson’s Disease
The Prevalence of Tick Infections in Pediatric Bipolar Disorders
Expanding Hope for Rare Skin Disease: CHOP Becomes Sixth Treatment Center for Revolutionary ZEVASKYN Gene Therapy
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Rare Disease
“I Am More Than the Person in the Bed” – Kristian’s Message to the World
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it.
Chronic urticarias
Enanta Begins First-in-Human Trial of Oral KIT Inhibitor for Chronic Urticaria
As reported by Business Wire, Enanta Pharmaceuticals has initiated its first clinical study of EDP-978, a novel oral inhibitor of the KIT receptor tyrosine kinase
Spinal Muscular Atrophy
“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
Editor’s Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click
Cancer
Targeting Cancer’s Hidden Killer: New Therapy Takes Aim at Muscle-Wasting Syndrome
Cancer cachexia represents one of oncology’s most overlooked catastrophes. Patients waste away, lose appetite, and deteriorate despite receiving chemotherapy, yet few treatment options exist to
Mucolipidoses (ML)
Throwback Thursday: Updates on Patients from Patient Worthy’s Past
I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022,
Bladder cancer
Jimi’s Fight Against Bladder Cancer
I was born in Long Island, New York, and raised in Southern California, where I grew up surrounded by sunshine and the beauty of the
Diabetic macular edema
A Six-Month Solution: How Eclipse Life Sciences Is Tackling a Persistent Vision Problem
Diabetic macular edema represents a silent threat to working professionals across America. The condition, which causes fluid accumulation in the macula, the eye’s central focusing
Lymphoma
ModeX Advances Novel Tetraspecific Antibody Into First-in-Human Study for B‑Cell Lymphoma
As reported on PharmaBiz, ModeX Therapeutics, a clinical-stage biotechnology company within OPKO Health, has begun dosing patients in a first-in-human clinical trial evaluating MDX2003, a
Malaria
Blood Supply, Malaria, and the Contribution of Grifols Pharma
A New Shield for the Blood Supply: Grifols Earns FDA Approval for Malaria Test Grifols has reached a significant milestone in transfusion medicine with the
Skin Disease
Galderma’s Latest Peptide Innovation Addresses a Critical Gap in Cosmetic Dermatology
The aesthetic skincare market has long overlooked a fundamental principle: skin preparation matters as much as the procedure itself. According to PharmaBiz.com, Galderma’s Alastin brand
Major Depressive Disorder
Motif Neurotech Gains FDA Clearance to Launch First-in-Human Trial of Implantable BCI for Depression
As reported on Business Wire, Motif Neurotech has received clearance from the U.S. Food and Drug Administration (FDA) to initiate its first clinical study evaluating
How to Transform Your Skin with Simple Natural Care Habits
For patients with rare diseases and the caregivers in healthcare who support them, skin changes often become a daily friction point rather than a simple
Pancreatic Cancer
Breakthrough in Pancreatic Cancer Treatment: How Revolution Medicines’ RAS Inhibitor Is Reshaping Patient Outcomes
Pancreatic cancer remains one of medicine’s most formidable challenges, and recent clinical developments suggest a potential turning point. Revolution Medicines presented compelling evidence this week
IgA Nephropathy (IgAN)
Ultomiris Reduces Proteinuria in Phase III Trial for IgA Nephropathy
Early Phase III data suggest C5 complement inhibition may alter disease course in IgAN In a recent press release, AstraZeneca reported that Ultomiris (ravulizumab) has
Rare Disease
Regular Yoga Practice Improves Cardiometabolic Health
Yoga is often celebrated for its ability to help people find their “zen,” but new research shows it might be doing some heavy lifting for
Parkinson's Disease
AskBio Scales Up Gene Therapy Manufacturing for Landmark Parkinson’s Disease Trial
AskBio Inc., a gene therapy subsidiary of pharmaceutical giant Bayer AG, has taken a significant step forward in advancing treatment options for Parkinson’s disease. According
Moebius Syndrome
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
For nearly two decades, I’ve been building and maintaining a global online community for individuals and families affected by Moebius syndrome, a rare neurological condition
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May is Hepatitis Awareness Month. This observance serves as a time to raise awareness about hepatitis A, hepatitis B, and hepatitis C while encouraging testing, vaccination, and timely treatment. Viral hepatitis is a major public health threat and worse, hundreds of thousands of people in the United States don't know they are infected.
May 19 is National Hepatitis Testing Day. The goal of this day is to help raise awareness about viral hepatitis and to encourage more individuals to get tested for hepatitis and learn their status. The CDC recommends all adults aged 18 years and older be screened at least once in their lifetimes for hepatitis B and hepatitis C.
Help break the stigma! Share your hepatitis story with us here: bit.ly/4dV7gru
#hepatitis #Hepatitisawarenessday #PatientWorthy
Elephants and TeaHealing doesn’t always mean “moving on.” Sometimes it means making space for what’s been lost while continuing forward.
Join us on May 21st at 7 PM ET for a Healing Through Writing Workshop focused on Navigating Loss.
Together, we’ll use journaling and conversation as tools for reflection, connection, and healing.
Click Here to Register: us02web.zoom.us/meeting/register/9tDzvyxcTQqb-OjThNGmkA#/registration
#HealingThroughWriting #NavigatingLoss #WritingWorkshop #EmotionalHealing #StorytellingHealing #LossAndHealing #MentalHealthSupport #HealingJourney #ElephantsAndTea
National Organization for Rare Disorders, Inc. (NORD) #bechetsTomorrow, May 20, is International Behçet’s Disease Awareness Day, and the American Behcet's Disease Association - ABDA has everything you need to learn about this rare form of vasculitis, connect with others, and make an impact—including a webinar tomorrow with the Vasculitis Foundation and a virtual charity walk on Saturday.
Read their NORD Guest Blog, which features a wealth of resources every advocate, caregiver, and clinician should have on hand: rarediseases.org/guest-blog-uniting-for-behcets-disease-awareness/
We encourage you to wear blue and share YOUR Behçet’s story tomorrow!
