Huntington's disease
Heather and Nathan’s Journey with Huntington’s Disease
Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside
Major Breakthrough: Discovery of a Pathway that Allows Brain Cells to Move Toxic Material in Huntington’s Disease
Lupin Receives FDA Approval for Pitolisant: A Novel Solution for Narcolepsy Management
Can Your Morning Coffee Really Help Prevent Type 2 Diabetes?
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THE LATEST FROM PATIENT WORTHY
Ehlers-Danlos Syndrome
My Journey with Ehlers-Danlos Syndrome
My name is Amanda. I was diagnosed with a genetic connective tissue disease called Hypermobile Ehlers-Danlos Syndrome (h-EDS) about four years ago. However, the diagnosis
Amyloidosis
Faye’s Journey with Amyloidosis
My name is Faye. I’m blessed to be the wife of the love of my life, Brad, and the proud mom of two extraordinary boys
Obesity
Setmelanotide Shows Limited Efficacy in Heterozygous Obesity Gene Carriers
A major clinical trial has revealed disappointing results for setmelanotide, a promising obesity treatment, when used in patients carrying single genetic mutations associated with weight
Cancer
Illumina and Labcorp Deepen Collaboration to Broaden Access to Precision Oncology Testing
As reported on PharmaBiz, Illumina and Labcorp have announced an expanded strategic collaboration aimed at accelerating precision oncology by applying next-generation sequencing (NGS) technologies more
Ehlers-Danlos Syndrome
Opinion Piece: Insurance Abuse
Editor’s Note: The views, thoughts, and opinions expressed in this article belong solely to the author and do not necessarily reflect the position of Patient
non-small cell lung cancer
Eftilagimod Alfa Setback: Immutep Halts Landmark Lung Cancer Trial Following Futility Analysis
Immutep Limited has announced the discontinuation of TACTI-004, a pivotal Phase III clinical trial investigating eftilagimod alfa (efti) as a first-line treatment for advanced non-small
non-small cell lung cancer
Dizal’s Zegfrovy Delivers Phase 3 Breakthrough in EGFR Exon 20–Mutant NSCLC
As reported on FiercePharma, China-based biotech Dizal Pharmaceutical has reported a pivotal phase 3 success for its oral EGFR inhibitor Zegfrovy (sunvozertinib), marking a potential
Renal cancer
The Luck of the Irish: A Parable of Inheritance, Illness, and Hope
Editor’s Note: The following article was originally written by Kelly Curtin-Hallinan, and shared with us by our friends at Elephants & Tea. This past St.
RSV
FDA Approves RSV Vaccine for Younger Adults: What You Need to Know
Arexvy Now Available for Adults Aged 18–49 with Certain Health Conditions The U.S. Food and Drug Administration has granted approval to expand GSK’s Arexvy respiratory
Rare Disease
FDA Expands GSK’s Arexvy Approval to Younger Adults at Elevated RSV Risk
As reported on PharmaBiz, the US Food and Drug Administration has broadened the approved use of GSK’s respiratory syncytial virus (RSV) vaccine, Arexvy, to include
Niemann-Pick Type C Disease
An Excerpt from “A Ribbon for Your Hair”
Editor’s Note: The following in from author Stephen Policoff, whose book A Ribbon for Your Hair is out today! Introduction When Stephen Policoff’s adopted daughter
Glioma
Telix Pharmaceuticals Advances Brain Cancer Imaging with European Regulatory Submission
A New Solution to Address Critical Gaps in Glioma Diagnosis and Management Telix Pharmaceuticals, a biopharmaceutical company specializing in therapeutic and diagnostic radiopharmaceuticals, has taken
Wet macular degeneration
VIS-101 Demonstrates Favorable Safety and Early Efficacy in Wet AMD
As reported on Healio, a novel biologic targeting two key angiogenic pathways has shown encouraging early results for the treatment of wet age-related macular degeneration
Charcot-Marie-Tooth disease
Jenny Decker’s Journey: An Update
Editor’s Note: This story is a continuation of Jenny Decker’s global sailing voyage. To see the original article, please click here. Many of our Patient
gastric cancer
Imfinzi Achieves European Milestone: First Immunotherapy to Improve Survival in Early Gastric Cancer
AstraZeneca has received European Commission approval for Imfinzi (durvalumab) in combination with FLOT chemotherapy, a landmark achievement representing the first immunotherapy-based regimen to demonstrate survival
Rare Disease
New Pain Medicine Seeking FDA Approval
People with rare and chronic disease often suffer from long term pain. New ways to alleviate this pain are needed. According to a press release
Rare Disease
A Small Taste of Freedom in an Unfree World
“Do not go gentle into that good night. Rage, rage against the dying of the light.” –Dylan Thomas One may have thought, after six months
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Vestibular Disorders Association (VEDA)Many people living with vestibular disorders experience what is often called the dizzy–anxious–dizzy cycle.
After an episode of dizziness or imbalance, the brain may begin to associate certain sensations, movements, or environments with danger ⚠️. This triggers a protective response, increasing anxiety and vigilance.
Heightened vigilance can make symptoms feel more noticeable, which can then reinforce fear and continue the cycle. This does not mean symptoms are imagined or “just anxiety.” It reflects how the nervous system learns to protect the body after a destabilizing experience 🧠.
Understanding this cycle and the emotional impacts of vestibular disorders can reduce self-blame and support more effective recovery strategies.
Learn more here:
vestibular.org/article/coping-support/psychology/emotional-impacts-of-vestibular-disorders/
#VestibularDisorders #DizzinessAwareness #AnxietyAndDizziness #NervousSystem #InvisibleIllness #EmotionalHealth #CopingSupport #VeDA
Don't miss camp ! Children's Craniofacial Association#PARTNERSUNDAY
Our friends at FACES: The National Craniofacial Association have opened registration for their camp!
Learn more at: www.faces-cranio.org/faces-camp
United Leukodystrophy FoundationJoin the United Leukodystrophy Foundation (ULF) Sunday, April 12th at 1:00 PM ET/ 12:00 PM CT for a virtual support group designed specifically for caregivers of families affected by leukodystrophies.
Register here: us02web.zoom.us/meeting/register/txScW6SbRguEFzKJJVOGqw#/registration #Leukodystrophy #ULF
