Ella Casano is a 12-year-old living with Idiopathic Thrombocytopenic Purpura (ITP) who had a brilliant idea about how she could help other children living with rare diseases like her own.…
According to a story from The Monitor, Nubia Garza's ten year old daughter Edie was diagnosed with the rare condition Williams syndrome when she was just four months old. The…
After years of having multiple physical complications and problems, a young woman in Spirit Lake found medical answers in 2016. In that year, Jessica Brown was diagnosed with Chiari…
According to a story from abc.net.au, Todd Murfitt from Adelaide, Australia, was only 35 when he noticed that his left hand was starting to tremor as he typed. After a…
About a month ago, we reported on a story about an Irish family that is facing deportation from Australia. The family includes Anthony and Christine Hyde along with their three…
According to a story from BBC, 35 year old Kimberly Chard knows that she probably doesn't have much longer to live. Kimberly was born with cystic fibrosis, a rare disorder…
According to a story from kwqc.com, pediatric nurse Allee Mullen was devastated when her developing child was diagnosed with spina bifida, a rare and potentially debilitating birth defect. In order…
The Beginning of the Journey Claudia Martinez is a medical student at UTHealth McGovern Medical School. Her dream is, and always has been, to be a doctor. But an unexpected…
According to a story from Wapakoneta Daily News, Greg was devastated when he learned that his brother was diagnosed with hereditary transthyretin mediated (hATTR) amyloidosis. Ultimately, the disease would take…
According to a story from CBS Minnesota, the Wahlstrom family has been hit hard by a deadly rare illness called Batten disease. Parents Todd and Laura's two children, Drew and…
Sydney Mccallister is a 32-year-old woman diagnosed with spina bifida. Essentially, the condition means that the neural tube has not closed all the way during the first month of embryonic…
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Ron Davis and his gene-sequencing technologies were mentioned years ago in The Atlantic alongside Elon Musk (SpaceX) and Jeff Bezos of Amazon fame. Since then, Davis has amassed over…
According to a story from westernmassnews.com, the community of Monson, Massachusetts is coming together to support Jason Harris and his family. Jason is ten years old and lives with Duchenne…
Lynsey Chediak recently penned a story in Qrius about the future of rare disease treatment. Lynsey was born with arthrogryposis, a rare congenital condition in which scarring of muscle tissue…
According to a story from CBS Philly, Jackson Guernsey, who is just two years old, was diagnosed with rare leukodystrophy just six months ago. While the disease has been taking…
According to a story from cbc.ca, Adrienne Mahoney was alive for over a year in a half without a pulse. The only thing that kept her alive was a special…
According to a story from Express Digest, Lucy and Mike Carroll don't know for how much longer their children will be able to live happy lives. This is because their…
According to a story from Motherhood In-Style Magazine, Miley Timmermanns was only two years old when she was first diagnosed with an extremely rare disorder: Cornelia de Lange syndrome. Parents…
According to a story from Kamloops Coffee Talk, Darrin Rein, of Kamloops, British Columbia, was just recently diagnosed with spinocerebellar ataxia, a rare disease that affects mobility and coordination. Despite…
According to a story from The Jerusalem Post, Adrian Krainer is a prominent molecular geneticist and biochemist. His research was also pivotal in developing the first-ever disease modifying treatment for…
SCID Severe combined immunodeficiency (SCID) is a rare disease which causes patients to have little to no immune response. With practically no immune system, SCID patients are very susceptible to…
Behcet’s Awareness Day is May 20th! Behcet’s disease (also known as Behçet’s and Behçet’s syndrome) is a rare condition that causes chronic inflammation which manifests as ulcers (commonly referred to…
According to a story from KUT News, Ava Shepperd and John Ben Shepperd, aged 14 and 18 respectively, always knew that they would eventually need to get kidney transplants. This…
According to a story from F3News, 77 year old Ron Davis has lived a life highlighted by incredible scientific achievement. He leads the lab that played a critical role in…
According to a story from Palomar Health, a patient with Hunter syndrome is about to finish up the company's Pathmaker Internship program. The patient in question is Kyle Underwood, who…
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