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
An Itch That Was Taking Over My Thoughts: A Story About Primary Biliary Cholangitis
- February 25, 2026
Dear Cancer: We Are Stronger Than You
AstraZeneca Pursues FDA Approval for Injectable Lupus Treatment Following European Authorization
Gretchen’s Battle with Salmonella Osteomyelitis
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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
Acromegaly
Tessa’s Journey with Acromegaly
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12
Charcot-Marie-Tooth disease
Can the Cost of Having a Rare Disease Be Calculated?
Editor’s Note: Patient Worthy is pleased to share this article, submitted to us by George Simpson, who volunteers for the CMT Research Foundation. There are
Primary Biliary Cholangitis
IQIRVO: A Revolutionary PPAR Agonist Transforms Second-Line Treatment for Primary Biliary Cholangitis
Primary biliary cholangitis (PBC) represents a chronic, progressive autoimmune liver disease characterized by the destruction of small bile ducts, leading to cholestasis and potentially fatal
Myelofibrosis
We Will Never Ring the Bell – My Myelofibrosis Story
Editor’s Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration
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Did you know? Audrey Hepburn lived with and eventually passed away from pseudomyxoma peritonei, a rare abdominal cancer. This Rare Disease Month, we celebrate her memory and support those living with rare conditions. #rarediseasemonth #pseudomyxomaperitonei #PMP #audreyhepburn #raredisease
#shareyourstory with us here: bit.ly/4dV7gru
For 10 years, ages five through 15, Erica watched her face change and become asymmetrical as a tumor like formation protruded from her face just under her left eye. It caused her eye to close up and put pressure on her right eye, which then bulged. In addition to the physical changes, she endured debilitating migraines, extreme nausea, random vision loss, breathing issues, slurred speech and weakness of her limbs. Despite visits to doctors, hospitals and specialists over that ten-year span, no one was able to tell her family what was happening. Finally, she was diagnosed with the rare genetic disorder Arteriovenous Malformation, aka AVM, and surgery was completed a few weeks later.
The majority of AVMs are usually located in the brain, and some people don’t know until there’s a rupture/hemorrhage. In Erica’s case, her family knew something was wrong because they could see the physical changes in her face, so they immediately began seeking medical advice. In 2019, a year after her surgery, Erica contacted The Aneurysm and AVM Foundation and founded their Youth Ambassador Program, which now has a network of young survivors and family members nationwide. Her main drive behind this program was to find other young survivors and their families, so they would know they’re not alone. With less than 1% of the population suffering from this disorder, it is almost next to impossible to meet people who have been through it or understand what you’ve been through, so it’s a very lonely journey.
Now, eight years after her life-changing surgery, Erica‘s life has truly changed. She’s much healthier, able to do a lot of activities that she could not participate in prior to the surgery, and she has spent the past seven years advocating for the AVM community. Through TV/newspaper/magazine/online interviews, where she shares her story and spreads AVM awareness, Erica’s goal is to help struggling families identify with the symptoms she discusses and share the info with their doctors. If she had seen just one person sharing their AVM story on TV or in a magazine, she could’ve quickly identified with their symptoms and asked her doctor if maybe this was the problem. As we acknowledge Rare Disease Month and Rare Disease Day worldwide, always remember that you’re not alone. In the AVM community our tag line is, “From survivors to caregivers, researchers to advocates, we are #UnitedAndRare — because it’s only RARE until it happens to you!”
Share your rare disease story with us here: bit.ly/4dV7gru
#RareDiseaseWeek2026 #ArteriovenousMalformation #PatientWorthy
Ectodermal Dysplasia Awareness Month is a chance to learn about the genetic conditions that affect hair, teeth, skin, nails, and sweat glands. People living with ectodermal dysplasia often navigate challenges like temperature regulation and dental or skin differences. By spreading awareness, we help build understanding, support, and early recognition for those affected. 💛 #ectodermaldysplasiaawareness #rarediseaseawareness
