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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

Multiple Sclerosis

Multiple Sclerosis and Ice Hockey

A little background on me, my name is Gene Pohancsek and I was born and raised in western New York. I am married and have

Chronic Kidney Disease

Why It’s Getting Harder to Get a Kidney Transplant — And What That Means for Patients

Right now, more people than ever are hoping for a kidney transplant — but the system is struggling to keep up. According to Becker’s Clinical

Alzheimer's disease

Alzheimer’s: A Well-Earned Glimmer of Hope

Scientists have earnestly delved into a new study to test a drug for individuals who have genetically inherited a type of early-onset Alzheimer’s disease known