Myelofibrosis
James’ Story: Navigating Life With Myelofibrosis
Editor’s Note: This article was shared with us by our friends at Heal Canada. To see the article in its original format, please click here.
Roche’s Phase III persevERA Trial of Giredestrant Misses Primary Endpoint in Advanced ER-Positive Breast Cancer
BASELINE
Daiichi Sankyo Advances Enhertu for High-Risk Breast Cancer: New Hope After Neoadjuvant Therapy
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Chronic Lymphocytic Leukemia
FDA Approves Revolutionary Oral Combination Therapy for Chronic Lymphocytic Leukemia, Offering Patients Freedom from Long-Term Treatment
AbbVie has announced a landmark regulatory milestone with the US FDA’s approval of a supplemental new drug application (sNDA) for the combination of Venclexta (venetoclax)
Rare Disease
First Patient Dosed in Phase 3 CLARITY Trial Evaluating Solriamfetol for MDD With Excessive Daytime Sleepiness
As published in Sleep Review Magazine, Axsome Therapeutics has officially begun dosing patients in its Phase 3 CLARITY trial, a study designed to evaluate solriamfetol
Fibrosis
Breaking the Fibrosis Barrier: How Fibrocor Therapeutics Is Revolutionizing Kidney Disease Treatment
Fibrosis, the accumulation of scar tissue in organs, disrupts normal organ function and leads to progressive impairment. Currently, there is no cure, and existing treatments
Diabetes Type 1
A New Chapter in Diabetes Care: Inside-the-Body Technology Breaks Ground
The relationship between people with type 1 diabetes and their medication has always been complicated. For decades, managing the condition has required constant vigilance including
Huntington's disease
Harness Therapeutics Advances First‑in‑Class Huntington’s Disease Candidate HRN001 and Forms Expert Clinical Advisory Board
As reported on PharmaBiz, Harness Therapeutics has selected HRN001 as its lead therapeutic candidate for Huntington’s disease (HD), marking a major milestone for the company
Rare Disease
Life Impact of Pain – Pain Series Part 2 of 3
Click here to see Part 1 of of this 3 part pain series. If you suffer with chronic pain, you not only live with the unrelenting
Obesity
Monthly Obesity Treatment Gets Easier: Lilly’s New Zepbound Pen Simplifies Weight Loss Injections
Patients using Zepbound for weight management now have a simpler option for administering their medication. As reported by PharmaLive.com, Eli Lilly received FDA clearance for
Prostate Cancer
Redefining Cancer Treatment: Podcast Interview with Dr. Charles Link on Sync-T and the Future of Immunotherapy
On this episode of Wait, How Do You Spell That?, host Bree Clare sits down with Dr. Charles Link, a pioneering oncologist whose career has
Bladder cancer
“At 44, I Thought I Was Starting Over” – Kristian’s Bladder Cancer Story
At 44 years old, I was ready to hit the reset button. In March of 2025, my partner and I stepped away from our careers.
Ovarian Cancer
British Columbia Researchers Develop a System to Reduce Ovarian Cancer by 80%
Ovarian cancer is a serious gynecological cancer with no reliable screening test, resulting in limited treatment options and a low number of survivors. Each year
Fibrodysplasia Ossificans Progressiva (FOP)
Breakthrough in Rare Bone Disease: FDA Fast-Tracks Garetosmab for Fibrodysplasia Ossificans Progressiva
Regeneron Pharmaceuticals announced that the U.S. Food and Drug Administration has accepted for Priority Review the Biologics License Application (BLA) for garetosmab, marking a significant
Datroway Receives U.S. Priority Review for First‑Line Treatment of Metastatic Triple‑Negative Breast Cancer
AstraZeneca and Daiichi Sankyo’s antibody‑drug conjugate Datroway (datopotamab deruxtecan) has been granted Priority Review by the U.S. Food and Drug Administration (FDA) for use as
Urea cycle disorders
More Than a Diagnosis: Gabriela’s Journey With Lysinuric Protein Intolerance, Urea Cycle Disorder, and Unshakable Faith
As a little girl, I believed miracles only existed in movies. They felt distant, beautiful stories meant for someone else. I never imagined that my
Psoriasis
Dual Approach to Disease: Eli Lilly’s Zepbound-Taltz Combination Demonstrates Breakthrough Results in Psoriasis Treatment
Eli Lilly is making strategic moves to expand its obesity medication Zepbound beyond weight management, demonstrating promising results when combined with its autoimmune therapeutic Taltz
Limb-girdle muscular dystrophy type 2A
My Journey with Limb-Girdle Muscular Dystrophy (LGMDR1)
Editor’s Note: This story was submitted to Patient Worthy by Ghulam Ali, Founder & CEO, Muscular Dystrophy Pakistan. I am 35 years old and hold
Cancer
Eat the Rainbow Winter Week 11: Satisfying Snacks
Editor’s Note: This article was shared with us by our friends at cancerdietitian.com. EtR PROGRAM UPDATES: Welcome to Week 11 of the Eat the Rainbow Fruit
Cancer
Triple-Target Immunotherapy for Solid Tumors Advances – Novel Antibody Enters Pivotal Testing Phase
A Chinese biopharmaceutical company has cleared a major regulatory milestone with a groundbreaking approach to cancer immunotherapy. As reported by PharmaBiz.com, the FDA has authorized
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March is Deep Vein Thrombosis Awareness Month. 💙 🌀
Blood clots can happen to anyone, but awareness is one of the most powerful tools we have to prevent serious complications like DVT. Long travel, surgery, pregnancy, certain medical conditions, and even prolonged sitting can increase the risk. |
Take a moment today to learn the signs, move your body regularly, and encourage someone you care about to do the same. #stoptheclot #DVTAwareness #PatientWorthy
During Rare Disease Week in DC, we had the pleasure of meeting DaNice D Marshall, one of ten 2025 RareArtist Awardee winners! A telecommunications technician by trade, DaNice never painted before her granulomatosis with polyangiitis (GPA) diagnosis. She was initially hospitalized for 28 days, and no one could figure out what was wrong.
"I was told to make out a will and put my house in order. So I went home and I said, 'I don't know how to die. I know how to live.' I would lay my head down, go to sleep, and then wake up and BOOM, I'm still here. So for me, painting was salve, art is salve. It’s healing. My body is always in pain. I started with abstract art because I didn't know what I was doing, but after a while I started to do figurative art. Three years after I was diagnosed, someone noticed my art and suggested I put it out on social media. That's what I did, but really just for my family, and it took off! Since then, I've had my work on billboards in Boston. I've had nine solo shows. I've had 55 group exhibitions, was awarded a MassMOCA Residency Fellowship and several grants. All of this since I started doing figurative art in 2020.
Recently, I’ve started to convert my artwork to tactile cards and textural art, because I want to make my art accessible to neurodiverse people and those with low vision, so they can touch my art to see it.
This particular piece titled, “In Someone Else’s Shoes” depicts me, my interpretation of me. I'm always joyful. I'm always trying to bring joy, to be happy. But there's also a struggle. The shoes don't fit, I don't know where I'm going, I don't know if I'm going to make it. My disease is life threatening, so navigating the healthcare isn’t always easy. But it's what it is. I'm here, and that's all that matters. I call myself an "artivist" because I'm becoming more of an advocate for patients like me with rare diseases. I just want people to know art is society’s empathy muscle, it must be exercised daily to keep it strong ."
#RareDC2026 #RareDiseaseWeek #PatientWorthy #GPA
It's Multiple Sclerosis (MS) Awareness Month! Here's what you need to know about this chronic neurological disorder:
🧡 Nearly 1 million people in the U.S. live with MS, and 2.9 million people worldwide
🧡 MS is an autoimmune disease of the central nervous system, where the immune system attacks the brain and spinal cord
🧡 Symptoms vary, but can include vision problems, fatigue, trouble walking, numbness, and muscle weakness
🧡 It's typically diagnosed between ages 20-40
🧡 Women are diagnosed 2-3x more than men
🧡 There are four types of MS with different progression patterns: relapsing-remitting MS (RRMS), primary progressive MS (PPMS), secondary progressive MS (SPMS), and progressive-relapsing MS (PRMS)
🧡 RRMS is the most common, affecting about 85% of people at initial diagnosis
Share to raise awareness and support the MS community! Share your story with us here: bit.ly/4dV7gru #msawarenessmonth #mswarriors #multiplesclerosis #MultipleSclerosisAwarenessMonth
