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 two daughters. They keep my…
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Multiple Sclerosis and Ice Hockey
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 Leadership, even a small increase…
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Why It’s Getting Harder to Get a Kidney Transplant — And What That Means for Patients
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 as “dominantly inherited Alzheimer’s disease”.…
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Alzheimer’s: A Well-Earned Glimmer of Hope
The Ordinary Instant and the Shattering of Time
Patient Worthy is grateful to present this story written by Bud Hager by way of the Courageous Parents Network. CPN is a nonprofit organization that has oriented, equipped and empowered…
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The Ordinary Instant and the Shattering of Time
Scientists Have Discovered a Goldmine of Potential Antibiotics in the Immune System
One Million People: That is an estimate of the number of individuals who die from infections that resist drugs such as antibiotics according to a report in BBC News. Yet,…
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Scientists Have Discovered a Goldmine of Potential Antibiotics in the Immune System
Is What You’re Getting From Direct-To-Consumer Genetic Tests What You’re Hoping For?
Patient Worthy is honored to provide this story written by Shannon Wieloch by way of Stork Genetics. Stork Genetics is an organization that offers telehealth genetic counseling for adult, proactive,…
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Is What You’re Getting From Direct-To-Consumer Genetic Tests What You’re Hoping For?
Managing Chronic Kidney Disease through Diet
According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), eating the right diet is essential to managing chronic kidney disease. The NIDDK recommends that patients find…
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Managing Chronic Kidney Disease through Diet
Laura’s Journey with Charcot-Marie-Tooth: From Patient to Advocate
I've spent much of my life as an amateur athlete—competing in club sports, marathons, triathlons, and century rides. Staying active isn’t just about my physical health; it’s a core part…
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Laura’s Journey with Charcot-Marie-Tooth: From Patient to Advocate
The National Kidney Foundation honors 75 Years of Advocacy
In honor of Kidney Awareness Month, we would like to congratulate the National Kidney Foundation on celebrating 75 years as an organization fighting against kidney disease and for kidney disease…
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The National Kidney Foundation honors 75 Years of Advocacy
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Had High BMI as a Child? Your Risk of Chronic Kidney Disease (CKD) in Adulthood May Be Heightened
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
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Had High BMI as a Child? Your Risk of Chronic Kidney Disease (CKD) in Adulthood May Be Heightened
Facing The Uncertainty of GACI – Sienna’s Story
Only about 50% of those born with GACI survive. Patient Worthy is grateful to GACIGlobal for the ability to share Sienna's Story. GACI Global is a nonprofit organization whose mission…
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Facing The Uncertainty of GACI – Sienna’s Story
Inflammatory bowel disease (IBD) affects approximately 1.3% of the U.S. adult population
Inflammatory bowel disease (IBD) affects approximately 1.6 million people in the U.S. According to a report in Healio, this equates to about 1.3% of the adult population. IBD can be…
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Inflammatory bowel disease (IBD) affects approximately 1.3% of the U.S. adult population
Amber and Rowan – A Mother’s Perspective: Being Brave with SLC13A5
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Amber, mom to TESS Superhero Rowan, aims to give insight into what…
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Amber and Rowan – A Mother’s Perspective: Being Brave with SLC13A5
Dwayne’s Pompe story
Hi everyone, my name is Dwayne; I am 57 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I was 50 years old. I…
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Dwayne’s Pompe story
Measles outbreaks double in Texas and New Mexico
Measles cases in Texas and New Mexico have doubled according to Becker's Clinical Leadership surpassing 200. 30 cases have been confirmed in New Mexico, mostly in Lea County which is…
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Measles outbreaks double in Texas and New Mexico
The Ruminations of a Grin2b Mom
Patient Worthy is grateful to present this article by way of the CureGRIN Foundation. CureGRIN is a foundation founded and run by parents who are committed to improving the lives of people…
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The Ruminations of a Grin2b Mom
Zoe Ridgeway: My BHD Journey
Patient Worthy is honored to be able to share Zoe Ridgeway's story by way of theBHDFoundation.org. Zoe's story was shared for Rare Disease Day 2025 and the BHD Foundation believes…
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Zoe Ridgeway: My BHD Journey
The Danger of Misdiagnosing COPD
A presenter at the COPD 2024 International Conference spoke about the ease with which heart failure and preserved ejection factor (HfpE) is misdiagnosed in COPD patients due to the similarity…
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The Danger of Misdiagnosing COPD
How to Be a Friend: Rare Disease Edition
Editor's Note: Patient Worthy is grateful to present this article that was written by and shared with permission from Sue Skavlem, a care partner to her husband who is living with…
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How to Be a Friend: Rare Disease Edition
The Second Successful Genetically Edited Pig Transplant Performed by Harvard Surgeons at Mass General
Sixty-six-year-old Tim Andrews, a resident of New Hampshire, is the fourth patient worldwide to undergo a pig kidney transplantation. As reported recently in a Mass General News Release, Tim is…
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The Second Successful Genetically Edited Pig Transplant Performed by Harvard Surgeons at Mass General
