Primary Biliary Cholangitis
An Itch That Was Taking Over My Thoughts: A Story About Primary Biliary Cholangitis
It started with an itch. When I was 26 years old (2001), I started having an itch on the bottom of my feet. It was
Roche’s Phase III persevERA Trial of Giredestrant Misses Primary Endpoint in Advanced ER-Positive Breast Cancer
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Daiichi Sankyo Advances Enhertu for High-Risk Breast Cancer: New Hope After Neoadjuvant Therapy
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Breast Cancer
Dear Cancer: We Are Stronger Than You
Editor’s Note: This article was shared with Patient Worthy by our friends at Elephants & Tea. It was originally written by Jenny Gomez, a breast
Lupus
AstraZeneca Pursues FDA Approval for Injectable Lupus Treatment Following European Authorization
AstraZeneca is navigating the final regulatory hurdles for an alternative delivery method of its lupus therapy. As reported by PharmaBiz.com, the company received a complete
Osteomyelitis
Gretchen’s Battle with Salmonella Osteomyelitis
My name is Gretchen Burnett, & I survived a rare spinal bone infection called Salmonella osteomyelitis. Less than 2% of people with spinal involvement survive
Sjogren's Syndrome
Ronnie’s Journey: How a Lifelong Series of Symptoms Led to a Sjogren’s Diagnosis
As far as I can remember, I have always had an intolerance of heat and cold. I can remember at a young age not wanting
Fabry Disease
From Invisible Pain to Unwavering Spirit: My Fabry Disease Journey
For most of my life — starting when I was eight years old — I lived with a deep burning pain in my hands that
Ovarian Cancer
Breaking New Ground: Immunotherapy Now Available for Recurrent Ovarian Cancer Patients
When ovarian cancer returns and becomes resistant to platinum-based treatments, patients face one of oncology’s most difficult scenarios. As reported by Drugs.com, a new therapeutic
Mosaic Variegated Aneuploidy syndrome 3
Navigating Survivorship and Self-Advocacy After Childhood Cancer: Maria’s Journey with Mosaic Variegated Aneuploidy Syndrome 3 (MVA 3)
My story began before I was old enough to understand it. Childhood cancer shaped my body and my life long before I had words for
Ovarian Cancer
A New Treatment to Fight Ovarian Cancer has been Developed by UCLA Scientists
CAR-NKT cell therapy (NKT) is capable of precision targeting when equipped with CAR. The UCLA study’s co-senior author, Dr. Lili Yang stated that personalized immunotherapies
Myositis
Cabaletta Bio Advances Rare Disease Treatment with Pioneering Myositis Trial and Innovative Manufacturing Breakthrough
Cabaletta Bio has announced significant progress in its development of chimeric autoantibody receptor T cell (CAAR-T) therapies, marking a major milestone with the initiation of
Rare Disease
After the Diagnosis: Self-Harming Thoughts and So Many Questions
After being diagnosed with a rare disease or any other chronic health condition (in my case I have dystonia) and learning it is not a
Graves' Disease
Thriving Is a Choice: How Community, Boundaries, and Mindfulness Saved My Life & Thyroid
Editor’s Note: Patient Worthy is proud to share part 10 of 10 of Elena Genik’s blog, detailing her journey with Graves disease and thyroid eye
ornithine transcarbamylase deficiency
Pruitt’s Legacy: Raising Awareness of OTC Deficiency and Genetic Testing
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did
Stiff Person Syndrome
Celine Dion’s Stiff Person Syndrome Treatment and Progress
Ever since Celine Dion, the popular superstar, announced the cancellation of her 2023 tour due to a diagnosis of Stiff Person Syndrome, or SPS, the
Rare Disease
FDA Advances Rivoceranib-Camrelizumab Combination: A Promising Breakthrough for First-Line Unresectable Hepatocellular Carcinoma Treatment
Elevar Therapeutics has achieved a significant regulatory milestone with the US Food and Drug Administration’s acceptance of a resubmitted New Drug Application for rivoceranib in
Rare Disease
Nutcracker Syndrome, May-Thurner Syndrome, and More: Tytina’s Journey to a Proper Diagnosis
Sharing My Stripes 🦓 This Rare Disease Month, I’m honored to share my journey living as someone with a rare disease and what Rare Disease
Graves' Disease
Why Graves and Thyroid Eye Disease Are Immune System Disorders, Not Thyroid Disorders
Editor’s Note: Patient Worthy is honored to share part 9 of 10 of Elena Genik’s blog documenting her experiences with Graves disease and thyroid eye
Melanoma
FDA Listens: When Regulatory Bodies Recognize Humanity in the Fight Against Advanced Melanoma
When patients and families face a life-or-death disease, bureaucracy often feels like the enemy. Yet in early February 2026, the FDA delivered something rare: a
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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
