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Yearly Archives: 2025

  1. Home>
  2. 2025>
  3. Page 13
Gene’s Greatest Save: A Goalie’s Multiple Sclerosis Journey

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

  • Post author:Patient Worthy Contributor
  • Post published:April 24, 2025
  • Post category:Multiple Sclerosis

A little background on me - I was born and raised in Western NY. I am married and have two daughters. They keep me and my wife busy and our…

Continue Reading Gene’s Greatest Save: A Goalie’s Multiple Sclerosis Journey
A Review of ‘Rock Bottom: Gathering Gratitude for God in the Difficulties of Life’

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

  • Post author:Kathy Devanny
  • Post published:April 23, 2025
  • Post category:Mucolipidoses Type II

"Rock Bottom" is the story of a family who’s second born child, a son named Ashton, was born with Mucolipidosis Type II, a disease so rare and so frequently mistaken…

Continue Reading A Review of ‘Rock Bottom: Gathering Gratitude for God in the Difficulties of Life’
Love, Diagnosis and Everything After: Our GRIN1 Journey

Love, Diagnosis and Everything After: Our GRIN1 Journey

  • Post author:PW Collaborator
  • Post published:April 22, 2025
  • Post category:GRIN disorder

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 the 1970s and 80s. My…

Continue Reading Love, Diagnosis and Everything After: Our GRIN1 Journey
A Genetically Modified Pig Kidney Set a Record with Four Months Free of Dialysis

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

  • Post author:Rose Duesterwald
  • Post published:April 21, 2025
  • Post category:Rare Disease

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 for an organ transplant that…

Continue Reading A Genetically Modified Pig Kidney Set a Record with Four Months Free of Dialysis
The Story of Rory – Life and Death with CTNNB1 Syndrome

The Story of Rory – Life and Death with CTNNB1 Syndrome

  • Post author:Patient Worthy Contributor
  • Post published:April 18, 2025
  • Post category: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 to lose and everything left…

Continue Reading The Story of Rory – Life and Death with CTNNB1 Syndrome
Joy’s Story with Glanzmann Thrombasthenia

Joy’s Story with Glanzmann Thrombasthenia

  • Post author:PW Collaborator
  • Post published:April 17, 2025
  • Post category: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).  To learn more about the…

Continue Reading Joy’s Story with Glanzmann Thrombasthenia
Researchers Urge Awareness About the Risk to Children of Parental Alcohol

Researchers Urge Awareness About the Risk to Children of Parental Alcohol

  • Post author:Rose Duesterwald
  • Post published:April 16, 2025
  • Post category:Rare Disease

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 to be disruptive to mitochondrial,…

Continue Reading Researchers Urge Awareness About the Risk to Children of Parental Alcohol
Halima’s Story with Mucous Membrane Pemphigoid

Halima’s Story with Mucous Membrane Pemphigoid

  • Post author:PW Collaborator
  • Post published:April 15, 2025
  • Post category:Rare Disease

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 to improve the quality of…

Continue Reading Halima’s Story with Mucous Membrane Pemphigoid
The CDC Cautions that a Flea-Borne Disease Is on the Rise in California and Texas

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

  • Post author:Rose Duesterwald
  • Post published:April 14, 2025
  • Post category:Rare Disease

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 be a resurgence in the…

Continue Reading The CDC Cautions that a Flea-Borne Disease Is on the Rise in California and Texas
Its ‘Game Over’ When Mosquitos Siphon Human Blood Laced with a Poisonous Drug

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

  • Post author:Rose Duesterwald
  • Post published:April 11, 2025
  • Post category:Malaria

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, the plan is radical. The…

Continue Reading Its ‘Game Over’ When Mosquitos Siphon Human Blood Laced with a Poisonous Drug
Fear – John’s Parkinson’s Disease Story

Fear – John’s Parkinson’s Disease Story

  • Post author:Patient Worthy Contributor
  • Post published:April 10, 2025
  • Post category:Parkinson's Disease

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 Early Diagnosis, click here. The…

Continue Reading Fear – John’s Parkinson’s Disease Story
Soleno Therapeutics Receives FDA Approval for Prader-Willi Syndrome

Soleno Therapeutics Receives FDA Approval for Prader-Willi Syndrome

  • Post author:Rose Duesterwald
  • Post published:April 9, 2025
  • Post category: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 to be approved by the…

Continue Reading Soleno Therapeutics Receives FDA Approval for Prader-Willi Syndrome
Aplastic Anemia, Two Transplants, and Medical School: Jenny’s Story

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

  • Post author:Patient Worthy Contributor
  • Post published:April 8, 2025
  • Post category:Aplastic anemia

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 has served the aplastic anemia,…

Continue Reading Aplastic Anemia, Two Transplants, and Medical School: Jenny’s Story
Scientists Discover Mechanism for Liver Regeneration

Scientists Discover Mechanism for Liver Regeneration

  • Post author:Rose Duesterwald
  • Post published:April 7, 2025
  • Post category:Liver Research

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, reported in MedicalXpress, explains that…

Continue Reading Scientists Discover Mechanism for Liver Regeneration
“I Am A Chronic Illness Warrior” – Pashondra’s Journey With Ehlers-Danlos Syndrome

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

  • Post author:Patient Worthy Contributor
  • Post published:April 4, 2025
  • Post category: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 misdiagnosed twice before 2011, and…

Continue Reading “I Am A Chronic Illness Warrior” – Pashondra’s Journey With Ehlers-Danlos Syndrome
Grief in Early Diagnosis – John’s Parkinson’s Disease Story

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

  • Post author:Patient Worthy Contributor
  • Post published:April 3, 2025
  • Post category:Parkinson's Disease

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 that started this whole thing.…

Continue Reading Grief in Early Diagnosis – John’s Parkinson’s Disease Story
How do you love a child you know will die young?
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How do you love a child you know will die young?

  • Post author:Patient Worthy Contributor
  • Post published:April 3, 2025
  • Post category:Rare Disease

 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 - but you can’t stop…

Continue Reading How do you love a child you know will die young?
Liam’s Story – GACI Caregiver

Liam’s Story – GACI Caregiver

  • Post author:PW Collaborator
  • Post published:April 2, 2025
  • Post category:Generalized arterial calcification of infancy-1 (GACI1)

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 families affected by Generalized Arterial…

Continue Reading Liam’s Story – GACI Caregiver
Scientists are in a Race to End the Antibiotic Resistance Cycle

Scientists are in a Race to End the Antibiotic Resistance Cycle

  • Post author:Rose Duesterwald
  • Post published:April 1, 2025
  • Post category:Rare Disease

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 Journal. Scientists develop drugs to…

Continue Reading Scientists are in a Race to End the Antibiotic Resistance Cycle
Multiple Sclerosis and Ice Hockey

Multiple Sclerosis and Ice Hockey

  • Post author:Patient Worthy Contributor
  • Post published:March 31, 2025
  • Post category:Multiple Sclerosis

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…

Continue Reading Multiple Sclerosis and Ice Hockey
Why It’s Getting Harder to Get a Kidney Transplant — And What That Means for Patients

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

  • Post author:Bree Clare
  • Post published:March 28, 2025
  • Post category:Chronic Kidney Disease

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…

Continue Reading Why It’s Getting Harder to Get a Kidney Transplant — And What That Means for Patients
Alzheimer’s: A Well-Earned Glimmer of Hope

Alzheimer’s: A Well-Earned Glimmer of Hope

  • Post author:Rose Duesterwald
  • Post published:March 27, 2025
  • Post category:Alzheimer's disease

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”.…

Continue Reading Alzheimer’s: A Well-Earned Glimmer of Hope
The Ordinary Instant and the Shattering of Time

The Ordinary Instant and the Shattering of Time

  • Post author:PW Collaborator
  • Post published:March 26, 2025
  • Post category:Pachygyria

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…

Continue Reading The Ordinary Instant and the Shattering of Time
Scientists Have Discovered a Goldmine of Potential Antibiotics in the Immune System

Scientists Have Discovered a Goldmine of Potential Antibiotics in the Immune System

  • Post author:Rose Duesterwald
  • Post published:March 25, 2025
  • Post category:Rare Disease

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,…

Continue Reading 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?

Is What You’re Getting From Direct-To-Consumer Genetic Tests What You’re Hoping For?

  • Post author:Patient Worthy Contributor
  • Post published:March 24, 2025
  • Post category:Genetic Testing

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,…

Continue Reading Is What You’re Getting From Direct-To-Consumer Genetic Tests What You’re Hoping For?
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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