Vico Therapeutics Begins Twice‑Yearly Dosing of VO659 in Phase 1/2 Trial for Huntington’s Disease and Spinocerebellar Ataxias
- March 5, 2026
James’ Story: Navigating Life With Myelofibrosis
FDA Approves Revolutionary Oral Combination Therapy for Chronic Lymphocytic Leukemia, Offering Patients Freedom from Long-Term Treatment
First Patient Dosed in Phase 3 CLARITY Trial Evaluating Solriamfetol for MDD With Excessive Daytime Sleepiness
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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!
