
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

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

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

My name is Gretchen Burnett, & I survived a rare spinal bone infection called Salmonella osteomyelitis. Less than 2% of people with spinal involvement survive

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

For most of my life — starting when I was eight years old — I lived with a deep burning pain in my hands that

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

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

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

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

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

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

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

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

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

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

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

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

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
Tardive Dyskinesia is a serious neurological movement disorder that is often overlooked and misunderstood. Many people live with symptoms for years without answers because TD cannot be diagnosed with a blood test or a scan. Diagnosis depends on awareness, careful observation, and providers taking concerns seriously. Without proper screening, TD is frequently missed or dismissed, which can delay care and affect quality of life. Early diagnosis matters because it allows for monitoring, informed decisions, and access to appropriate care. Raising awareness helps people recognize concerns sooner, ask the right questions, and feel less alone. Listening and screening can change outcomes, and that is why understanding diagnosis and testing for TD is so important. Visit our website patientworthy.com for more information.
#tardivedyskinesia #TDawareness #movementdisorder #PatientWorthy #shareyourstory
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EURORDIS-Rare Diseases Europe🧬 Did you know that it takes on average five years for rare disease patients to get a diagnosis? And 70% wait more than a year after first seeking medical attention.
A delayed diagnosis doesn’t just delay treatment, it prolongs uncertainty, and increases emotional and financial strain. It can also mean missed opportunities for early intervention - especially for children.
Earlier and equitable diagnosis should not depend on geography. At EURORDIS, we work to strengthen newborn screening programmes, improve access to diagnostic tools, and ensure that people living with rare diseases receive timely and accurate diagnoses - no matter where they live.
🗣️ “If you have a rare disease, your chances of being diagnosed often depend on where you are born. This is why I am part of the EURORDIS Newborn Screening Working Group. I want to contribute to improving newborn screening programmes and earlier, accurate diagnosis of rare diseases.” - Eduardo López, President, Spanish Lysosomal Acid Lipase Deficiency Patient Organisation (AELALD)
🔗 Learn more about our work on diagnosis: go.eurordis.org/rare-disease-diagnosis
#RareDiseases 3rareDiseaseCommunity #AccessToTreatment #NewbornScreening
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#bethematch #donatelife JOIN THE REGISTRY ... See MoreSee Less



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