PODCAST: WAIT, HOW DO YOU SPELL THAT?

PATIENT WORTHY SERIES

Study of the Week: A New Treatment Option for Lupus?

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we

Rare Classroom: Alternating Hemiplegia of Childhood

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on

GACI/ARHR2 Awareness Day is February 1st: Spreading rare Disease Awareness

Generalized arterial calcification of infancy (GACI) and autosomal recessive hypophosphatemia rickets type 2 (ARHR2) Awareness Day is recognized each year on Feb 1. This is

Study of the Week: A new Approach to Treat Mitochondrial Disease

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we

Membranous Nephropathy

Wife Becomes Living Donor for Husband with Membranous Nephropathy

Over thirteen years ago, Josh McGuigan met his wife Stephanie – and the rest was history. In the time since, the couple has gotten married

Progeria

Novel Rare Form of Progeria Identified in Malaysia

Initially, when doctors in Malaysia met with the 21-year-old patient, they suspected that he had mandibuloacral dysplasia. The man, 21 years old, was short

Uveal melanoma

IOA-244 for Uveal Melanoma Earns Orphan Drug Designation

In early January 2023, Healio reported that IOA-244, a treatment designed for uveal melanoma, was granted Orphan Drug designation by the U.S. Food and

Mantle Cell Lymphoma

LP-284 for Mantle Cell Lymphoma Granted Orphan Drug Designation

Orphan Drug designation is granted by the FDA to drugs or biologics intended to treat, diagnose, or prevent a rare disease or condition. “Rare,”

Melanoma

INTERVIEWS: NFL Players Discuss the Rare, Chronic, and Underserved Causes that Mean the Most to Them (Pt. 3)

Before you read on, make sure to check out: Part 1 of our article: Green Bay Packers’ Shemar Jean-Charles and Los Angeles Chargers’ Storm Norton discuss

Guillain Barre Syndrome

Athlete Shares His Experience with GBS

Simeon Fryer was elected captain of the Texas A&M University Corpus Christi (TAMUCC) Islanders men’s basketball team for the 2022-23 season – and it’s a

Alzheimer's disease

Could Deep Brain Stimulation Reduce Alzheimer’s Disease Symptoms?

For more than two decades, deep brain stimulation (DBS) has been a therapeutic option for people living with Parkinson’s disease. Through regulating brain activity, DBS

Melanoma

RHOBH’s Teddi Mellencamp Discusses her Melanoma Surgery

At 41 years old, Teddi Mellencamp has done many great things in her life. The daughter of singer-songwriter John Mellencamp, Teddi is a successful podcast

Phenylketonuria

Trying to Manage My Son’s Rare Disease, and Why Parents Need More Support

Written by: Kala McWain There is no amount of time that can fully prepare you for the hard work and sacrifices it takes to be

Nyheim Hines wore MDA cleats to raise awareness of LGMD

Diffuse Intrinsic Pontine Glioma

INTERVIEWS: NFL Players Discuss the Rare, Chronic, and Underserved Causes that Mean the Most to Them (Pt. 2)

Before you read on, make sure to check out Part 1 of our article. In Part 1, Green Bay Packers Cornerback Shemar Jean-Charles discusses why he supports