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For many people living with rare diseases and chronic illnesses, the hardest work isn’t always visible.
It’s the planning, tracking, researching, advocating, and remembering that happens behind the scenes every single day.
Managing a complex condition often means becoming your own organizer, researcher, and advocate all at once.
If you carry that mental load, we see the effort it takes. And you’re not alone in it.
#RareDisease #ChronicIllness #YouAreNotAlone #PatientWorthy
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
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
