
The Quiet Revolution: When Hospitals Stop Being Your Second Home
Systemic lupus erythematosus punishes patients twice. First comes the disease itself, an autoimmune disorder where the body attacks its own tissues, causing debilitating fatigue, joint

Systemic lupus erythematosus punishes patients twice. First comes the disease itself, an autoimmune disorder where the body attacks its own tissues, causing debilitating fatigue, joint
As reported on BioSpace, the U.S. Food and Drug Administration (FDA) has approved Partner Therapeutics’ bispecific antibody Bizengri for adults with cholangiocarcinoma harboring an NRG1

Editor’s Note: Patient Worthy is honored to share this submission from Katie DiLorenzo, SVP, Patient and Pharmacy Services, PANTHERx® Rare. If you’re living with a

Mesenchymal stromal cells (MSCs) have tantalized the medical world for years. These versatile immune-modulating cells offer genuine hope for diseases ranging from epidermolysis bullosa, a

Patient Worthy is honored to reprint this selection from The Cancer Dietitian, by Julie Lanford MPH, RD, CSO, LDN. It’s important to know that no single

I am sharing my journey to give a voice to patients who suffer from extreme poly-pathology and are often left behind by the medical system.

For decades, colorectal cancer treatment has followed the same playbook: surgeons remove the tumor, then patients endure months of chemotherapy hoping to catch any remaining

AskBio Inc., a gene therapy company operating independently under Bayer AG, has taken a key step forward in the development of its investigational Parkinson’s disease

Editor’s Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. In college, a clinician told me I

Enpatoran offers hope for millions suffering from lupus skin manifestations Pharmaceutical company Merck KGaA has announced a significant milestone in lupus treatment research. As reported

As reported on PharmaBiz, Vanda Pharmaceuticals has launched a new clinical trial, known as Thetis, to evaluate whether its neurokinin‑1 (NK‑1) receptor antagonist Nereus (tradipitant)

Editor’s Note: Patient Worthy is honored to present this article, shared with us by our friends at the Seena Magowitz Foundation. When doctors diagnosed Michael

A major breakthrough for the 300 Irish patients living with butterfly skin. For the first time in Ireland, patients battling epidermolysis bullosa, a rare and

Editor’s Note: Patient Worthy is honored to share this story submitted to us by Regina Portnoy, a clinical researcher with over 20 years of experience.

Editor’s Note: Patient Worthy is honored to share this patient story from our friends at Elephants & Tea. To see the story in its original

As shared on drugs.com, Vascarta Inc. has reported encouraging results from a Phase 1b clinical study evaluating its investigational topical/transdermal curcumin gel, VAS-101, for the

Editor’s Note: Patient Worthy is honored to share this article from our friends at the Brighter Hope Foundation. To see the article in its original

Labcorp announced the nationwide availability of Agilent Technologies’ PD-L1 IHC 22C3 pharmDx, the only FDA-approved companion diagnostic designed to identify patients with platinum-resistant ovarian cancer


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The unofficial start of summer is here.
Time to book your trip to see fellow cystinosis warriors in the Windy City through Speak Up, Speak Out (closing soon!)
Speak Up, Speak Out aims to help you find your voice through spoken word. Travel and accommodations provided for warriors and siblings (ages 13-22) and a chaperone.
See URL in image to sign up today.
#cystinosis #CystinosisAndMe #RareAdvocate
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