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.
Harness Therapeutics Advances First‑in‑Class Huntington’s Disease Candidate HRN001 and Forms Expert Clinical Advisory Board
- March 3, 2026
Life Impact of Pain – Pain Series Part 2 of 3
Monthly Obesity Treatment Gets Easier: Lilly’s New Zepbound Pen Simplifies Weight Loss Injections
Redefining Cancer Treatment: Podcast Interview with Dr. Charles Link on Sync-T and the Future of Immunotherapy
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THE LATEST FROM PATIENT WORTHY
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
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
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
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UPCOMING EVENTS
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We were thrilled to meet the talented Zanny at Rare Disease Week in DC last week! Zanny was one of ten 2025 RareArtist Awardee winners and was recognized for her song "Alive Again", which is featured in this post. You can also listen to her song on Spotify: bit.ly/4u0iz9r
“At the age of 23, I developed a rare degenerative neurological disorder called Reflex Sympathetic Dystrophy / Complex Regional Pain Syndrome. It causes extreme constant pain, swelling, limb color/temperature changes, and muscle/bone changes. CRPS has changed my life in every way because I went from being a healthy young music teacher to being a full-time patient. I recently won the EveryLife Rare Artist award for my song “Alive Again” and was given the opportunity to attend Rare Disease Week on Capitol Hill. I was able to meet with the offices of California Senators Padilla and Schiff and Representative Brownley to advocate for rare disease funding and caregiver support. Hearing stories from other rare families and connecting with fellow rare warriors was so meaningful to me because it was the first time since diagnosis that I have felt part of a community. I feel very lucky to have had the opportunity to share my voice and also to have made some amazing new friends.”
#RareDC2026 #RareDiseaseWeek #RareArtist #ReflexSympatheticDystrophy #ComplexRegionalPainSyndrome #PatientWorthy
