The CDC reports that approximately 17% of parents in the U.S. have a disabled child. These parents not only cope with the stress that accompanies their attempts to provide stability,…
The holidays are a time of fun, family, and for many of us, a time when our chronic health conditions tend to flare up. We don’t mean for that to…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
By Rachel Whetstone Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays that are celebrated with cake…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
The use of the gene therapy elivaldogene autotemcel (Skysona), has been approved due to its success in the treatment of patients diagnosed with the neurological disease cerebral adrenoleukodystrophy (CALD). The…
In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the importance of accessibility in the…
According to a recent report in Healio News, the GLP-1 agonists are medications developed primarily to control blood sugar levels for type two diabetes. About the FLOW Clinical Trial The…
I’ve always been a nature lover. I like nothing better than going for a hike in the woods or strolling along the beach or gazing at the mountains. Since I…
Spinal muscular atrophy (SMA) is a rare disease causing progressive muscular weakness. Severe forms of the disease can be fatal to infants. Apitegromab is an experimental therapy that was successful…
Written by Faye Amado This is the story of my child who is a brave fighter in her life and continues to fight to survive and be normal as she…
In an exciting and heartwarming shift towards inclusivity, the world of sports is embracing a new era of diversity—one where disabled athletes are not only welcomed but celebrated for their…
Written by Audrey Getman September 25, 2020: The day I was diagnosed with myasthenia gravis (MG). One month prior: I was in the emergency room (ER) after experiencing a worsening…
Written by Bill Clark Part 2 - Our Journey from Liver Failure to Transplant Continued from Part 1 “A new liver.” That was Becky’s answer pretty much every morning from…
Most things in life don’t always go as expected. None of us ever truly prepares for a hardship that throws our life off course. Even in the case of a…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. On this episode of the podcast, we discuss the role…
Eighty-five-year-old Frank Meuers considers his 500th immunoglobulin infusion to be a cause for celebration. Frank has logged details of his doctor’s visits since his first dose of replacement therapy with…
Acknowledgment: This patient story is sponsored by Ipsen Biopharmaceuticals, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Jean's life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical conditions. Born in 1943 in…
The Riken Center team, headed by Dr. Takaomi Saido and using mice with Alzheimer’s, discovered that dopamine may lessen the brain’s physical symptoms and improve memory. The study, featured in…
Meet Liam, a 12-year-old patient at Shriners Children’s St. Louis, born with myelomeningocele, a severe form of spina bifida. This condition affects sensation in his legs, leaving him without feeling…
Fredericksburg, Virginia resident Johnny Boatman is a former national guardsman who had been in excellent physical condition all his life. That was until 2022 when he felt a sharp pain…
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