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
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye
Otsuka has launched an ambitious awareness initiative designed to fundamentally shift how healthcare professionals understand and approach attention-deficit/hyperactivity disorder (ADHD). As reported by FiercePharma.com, the
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe
It took two new cases of the deadly Nipah virus to remind people in West Bengal, India of the 1998 outbreak that killed over one
Takeda Pharmaceutical has reached a significant milestone in the development of oveporexton (TAK-861), with the US Food and Drug Administration officially accepting and granting Priority
As reported on MedicalXpress, the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion for several therapies this
Editor’s Note: Patient Worthy is proud to share part 7 of 10 of Elena Genik’s blog series, detailing her experiences with Graves disease and thyroid
As reported on the Manila Times, Aucta Pharmaceuticals has officially introduced PYQUVI™ (deflazacort) oral suspension 22.75 mg/mL, marking the company’s entry into the U.S. commercial
CureDuchenne is hosting several free events in 2026 to support families living with Duchenne and Becker muscular dystrophy. These events, called CureDuchenne CARES, will take
Twelve‑month, real‑world data from a large U.S. registry suggest that faricimab provides effective, durable, and safe treatment for retinal vein occlusion (RVO), reinforcing findings from
The U.S. Food and Drug Administration has agreed to review Otsuka Pharmaceutical’s application for centanafadine, a new extended‑release therapy under investigation for attention‑deficit hyperactivity disorder
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease
A first-of-its-kind Phase 3b study has shown that combining Eli Lilly’s Taltz (ixekizumab) with Zepbound (tirzepatide) delivers superior benefits for adults living with both active
As reported by Bioengineer, new insights published by Nastoupil L.J. in Nature Reviews Clinical Oncology (2026) highlight an important evolution in the management of relapsed
Editor’s Note: Patient Worthy is honored to share this article from our friends at Heal Canada, written by Karen Hawthorne. Anemia is one of the
A new study in Nature Communications and reported by Scienmag.com overturns a central assumption in eye biology by showing that key stem cells for the
In a recent statement by AstraZeneca, AstraZeneca and Daiichi Sankyo’s antibody‑drug conjugate Datroway (datopotamab deruxtecan) has been granted Priority Review by the U.S. Food and
It was wonderful to spend time chatting with Eva at Rare Disease Week on Capitol Hill! Eva is one of ten 2025 Rare Artist Awardee winners.
“I am a five-time survivor of Nasopharyngeal Carcinoma and disabled southeast Asian immigrant woman artist. In 2021, I lost my life to a rare disease- literally and figuratively. I flatlined when osteoradionecrosis complications sent me into multiple organ failures. After a long recovery, my life as a civil engineer also ended as my condition limits my hearing, speech and hand mobility. I get nutrition by PEG-tube and receive routine treatments for infections and cancer pain. Art is a medication on the fragility of life as well as a celebration of resilience. “Soaring Unbroken” features a coastal trail near my Bay Area home where encounters with majestic birds become reminders to soar above my pain. By incorporating nature with ancestral patterns of my Indonesian heritage, I began to reclaim my lost identity and started painting with my non-dominant hand. My art practice has allowed me to serve in the DeYoung Museum Flower Committee and as visiting artist in local intergenerational and refugee non-profits. Although these are rewarding acts of service, I still yearn to share my story and build a creative resource network for other mid-age rare disease survivors rebuilding their sense of purpose and community.”
#RareDC2026 #RareDiseaseWeek #PatientWorthy #RareArtist #NasopharyngealCarcinoma
Today, on Dissociative Identity Disorder Awareness Day, we take time to honor and support the 1–3% of people worldwide living with DID — a complex, trauma‑related mental health condition that is often misunderstood and misrepresented.
DID develops as a response to severe or chronic childhood trauma, and many individuals spend years navigating misdiagnosis or stigma before receiving proper care.
Let’s use this day to:
💜 Replace myths with understanding
💜 Challenge stigma fueled by media portrayals
💜 Amplify the voices of survivors
💜 Promote compassion, education, and trauma‑informed support
Awareness saves lives. Empathy changes them.
#DIDAwarenessDay #TraumaInformedCare #MentalHealthMatters #PatientWorthy
Vasculitis FoundationHundreds of thousands of people live with vasculitis, but limited research is done. 💜
On today’s National Rare Disease Day, we want to give thanks to 5000+ members of the VPPRN who are moving research forward!
You can help research keep pace! When you check in with the VPPRN, you are driving meaningful advancements in medicine. Every response helps doctors learn directly from your lived experience.
You can power the next discovery in 2 steps:
⭐ Log into www.vpprn.org/login
⭐ Complete your forms
Today we have better studies, better answers, because of you!
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