Patient Worthy

Alpha-1 Antitrypsin Deficiency

Unseen and Underdiagnosed: Betrice’s Fight to Raise Awareness of Alpha-1 in the Black Community

Patient Worthy Contributor - April 25, 2025

Primary Biliary Cholangitis

Lisa’s Journey with Primary Biliary Cholangitis (PBC)

Multiple Sclerosis

Gene’s Greatest Save: A Goalie’s Multiple Sclerosis Journey

Mucolipidoses Type II

A Review of ‘Rock Bottom: Gathering Gratitude for God in the Difficulties of Life’

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GRIN disorder

Love, Diagnosis and Everything After: Our GRIN1 Journey

There was rarely a quiet moment in my childhood home as the youngest of seven kids in a bustling, loving family in Pittsburgh, Pennsylvania during

Rare Disease

A Genetically Modified Pig Kidney Set a Record with Four Months Free of Dialysis

In 1999, Towana Looney, a resident of Alabama, donated one of her own kidneys to help save her mother’s life. Then Towana waited eight years

IgA Nephropathy (IgAN)

Yes, I CAN: Learn About a Clinical Research Study for IgA Nephropathy (IgAN)

Acknowledgment: This story is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our

CTNNB1 syndrome

The Story of Rory – Life and Death with CTNNB1 Syndrome

This is Rachel Heilmann‘s story – This is about how grief can fuel action, and why the smartest innovators are the ones with nothing left

Glanzmann thrombasthenia

Joy’s Story with Glanzmann Thrombasthenia

Patient Worthy is fortunate to be partnered with the Glanzmann Research Foundation, Inc. and proud to present Joy’s story of living with Glanzmann Thrombasthenia (GT).

Rare Disease

Researchers Urge Awareness About the Risk to Children of Parental Alcohol

A recent study by Texas A&M researchers evaluated the results to male offspring of parental alcohol exposure. The exposure to the chemical diethylnitrosamine was found

Rare Disease

Halima’s Story with Mucous Membrane Pemphigoid

Patient Worthy is so grateful to our partners IPPF-The International Pemphigus & Pemphigoid Foundation and for the change to share Halima’s story. IPPF’s mission is

Rare Disease

The CDC Cautions that a Flea-Borne Disease Is on the Rise in California and Texas

Due to the efforts of public health officials in the 1940s, Murine typhus was almost eradicated in the United States. However, there now appears to

Malaria

Its ‘Game Over’ When Mosquitos Siphon Human Blood Laced with a Poisonous Drug

Malaria remains responsible for 50,000 deaths annually. An ever-expanding population coupled with malaria gaining resistance to treatments are prominent roadblocks. As reported in Science Alert,

Parkinson's Disease

Fear – John’s Parkinson’s Disease Story

Patient Worthy is proud to support Parkinson’s Disease Awareness Month, and we are honored to share John’s story. To read John’s story about Grief in

Prader-Willi Syndrome

Soleno Therapeutics Receives FDA Approval for Prader-Willi Syndrome

Prader-Willi syndrome is a leading cause of obesity in children. The rare disease was discovered over seventy years ago, yet this is the first therapy

Aplastic anemia

Aplastic Anemia, Two Transplants, and Medical School: Jenny’s Story

Patient Worthy is privileged to share Jenny’s story through our partnership with the Aplastic Anemia and MDS International Foundation. Since 1983, the AAMDS International Foundation

Liver Research

Scientists Discover Mechanism for Liver Regeneration

National Cancer Center researchers have discovered a mechanism for liver regeneration in animal models triggered almost immediately after episodes of severe liver damage. The study,

Ehlers-Danlos Syndrome

“I Am A Chronic Illness Warrior” – Pashondra’s Journey With Ehlers-Danlos Syndrome

My name is Pashondra James and I am a CHRONIC ILLNESS WARRIOR! My fight with my health started way before I was diagnosed. I was

Parkinson's Disease

Grief in Early Diagnosis – John’s Parkinson’s Disease Story

Patient Worthy is proud to support Parkinson’s Disease Awareness Month, and we are honored to share John’s story. It was something my therapist told me

Rare Disease

How do you love a child you know will die young?

For Bubba 7/31/1997 – 7/22/2018 How do you love a child you know will die young? You love recklessly, with abandon. You don’t mean to

Generalized arterial calcification of infancy-1 (GACI1)

Liam’s Story – GACI Caregiver

Patient Worthy is honored to present this story by way of the GACI Global. GACI Global is a nonprofit organization whose mission is to connect

Rare Disease

Scientists are in a Race to End the Antibiotic Resistance Cycle

Professor Sophia Padilla, lead author of a new study on antibiotic resistance describes the cycle in an article published in UC Irvine’s American Chemical Society