Twenty-plus pills a day. Two biologic injections a month, two more every week. That’s my baseline just to function like a “normie” human and keep
Editor’s Note: Patient Worthy is honored to share this article, originally written by Danviel Villarte . Danviel is part of the Outreach Team at Receptive,
Editor’s Note: Patient Worthy is honored to share this story, submitted to us by Richard Poulin III. Late one night, a seemingly ordinary Facebook post
Editor’s Note: Patient Worthy is honored to share this article, originally written by Renzo Luzzatti, President and CEO of US-Rx Care. The White House recently
As reported on The Hill, Vitruvias Therapeutics has initiated a voluntary nationwide recall of a specific lot of thyroid medication after testing indicated the tablets
As reported on BioSpace, Vera Therapeutics’ newly approved IgA nephropathy (IgAN) treatment, Trutakna, is showing early evidence that it may help preserve kidney function, a
As reported on GlobeNewswire, a newly published set of expert consensus recommendations is seeking to improve the care experience for children diagnosed with neuroblastoma and
As reported on Newsweek, a novel experimental treatment for Guillain-Barré syndrome (GBS) may represent a major advance for patients living with the rare neurological disorder.
As reported on CNN, the U.S. Food and Drug Administration (FDA) has approved the first gene therapy designed to treat a rare inherited form of
As reported on MedicalXpress, researchers have reported that urolithin A, a compound derived from gut metabolism and available as an over-the-counter supplement, enhanced the effectiveness
Today the Tin Soldier Disease has a treatment. A clinical trial showed a 90% reduction in new bone development in adults with FOP. After Decades
Researchers Discover That One of Medicine’s Most Common Lab Tests May Warn of Rare But Serious Side Effects Weeks Before They Occur As reported on
As reported on Fierce BioTech, the U.S. Food and Drug Administration has granted approval to Lantheus’ positron emission tomography (PET) imaging agent Tauklarify (MK-6240), expanding
Scientists Discover Multiple Pathways Through Which an Ancient Fruit Protects the Cardiovascular System For centuries, pomegranates have held a special place in Middle Eastern and
Living with dystonia and other movement disorders means navigating far more than muscle spasms or abnormal postures—and if have dystonia, you already know this. As patients,
The Basic Problem: Why One Bad Gene Can Cause Big Trouble Imagine your body as a giant factory. Like any factory, it needs quality control—machines
As reported on BioSpace, the U.S. Food and Drug Administration has approved Regeneron’s Pasatru (garetosmab) for adults with fibrodysplasia ossificans progressiva (FOP), a rare genetic
Historic Milestone Offers Relief from Relentless Burden of Glycogen Storage Disease Type Ia According to a recent press release from Ultragenyx, after decades of medical
August is Psoriasis Action Month—a time to raise awareness, encourage understanding, and recognize that psoriasis is more than what may be visible on the skin.
For many people, living with psoriasis can involve navigating physical symptoms, daily challenges, treatment decisions, and the impact the condition can have on overall well-being. This month is an opportunity to learn, listen, share experiences, and help create a little more understanding for those living with it. 💜
Awareness can lead to understanding—and understanding can make people feel a little less alone.
#PsoriasisActionMonth #psoriasisawareness #PatientWorthy
Resilience looks different for everyone. It might be getting through a difficult day, finding the courage to ask for help, adapting to a new normal, or simply choosing to keep going.
There’s no one way to be resilient.
What does resilience look like for you? Share your answer in the comments!
#CommentBelow #Resilience #ChronicIllness #RareDisease #InvisibleIllness #PatientWorthy
Some journeys don't follow the path we expected, and living with a rare or chronic illness can bring unexpected challenges, difficult decisions, and moments of uncertainty. Yet even in those moments, there is strength in continuing forward.
Moving forward doesn't mean ignoring setbacks or pretending everything is okay. It means finding the courage to keep showing up for yourself, even when progress feels slow. It means adapting when plans change, celebrating small wins, and recognizing that every step forward matters. Hope isn't always found in big breakthroughs. Sometimes it's found in today's accomplishment, tomorrow's possibility, or the decision to keep trying despite the obstacles.
💙 One step. One day. One moment at a time.
#raredisease #chronicillness #PatientWorthy #patientadvocacy #resilience #hope #RareDiseaseCommunity #chronicillnesswarrior #continuingforward #StrongerTogether
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