Meet the drag queens and king of Drag Syndrome -- a group of Brits with Down syndrome who love performing in drag. And we're here for it! Some might not…
Meet Reece Anthony Rubino - a 13-year-old teen who loves video games, Disney World, and baseball. At just 3 months old, he was diagnosed with Type 1 spinal muscular atrophy…
Phenylketonuria (PKU) is a rare disease which causes phenylalanine (an amino acid) to build up in the body, leading to serious health complications. Since amino acids are obtained through the…
Terri considers herself “very lucky”. In the 80s her paternal grandmother and her grandmother’s two sisters were diagnosed with ovarian cancer. In the 90s, her family entered into the BRCA1…
Growing up "Normal" Growing up, Steph Derham always thought she was normal. She says she has her parents to thank for that. Steph is incredibly grateful that her mom and…
Frankie Jr. Muretic Frankie Jr. Muretic lives in Mississauga in Ontario, Canada. One morning he woke up with a rash, causing his parents concern. They brought the five-year-old boy to…
According to a publication from the Basingstoke Gazette, a Basingstoke family is raising money for the children's hospice center that supported them through the loss of a child. Jessica and…
According to a publication from the Warwick Beacon, friends and family of 4-year-old Banner Mazza are raising money for the boy's medical expenses. Mazza was recently diagnosed with ROHHAD, a…
According to a story from Find Me Cure, June is myasthenia gravis awareness month. Dr. Kemi Olawaiye-Dampson was first diagnosed with the disease after she gave birth to her first…
Ten-year-old Pennsylvania boy Josh Shorb has been hard at work raising money -- and awareness -- for a very rare disease he has, in an ultimate show of paying it…
According to a story from metro.co.uk, many rare diseases and chronic conditions do not necessarily make a person look sick a lot of the time. This can make it harder…
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Kris Newby and her husband were unaware that they both had been bitten by ticks while on vacation on a small ”Vineyard” island. An article that appeared recently in…
According to a story from mirror.co.uk, Jack Ruddock, aged four, had always been an endearing and good spirited child, but his life took a dramatic turn when he was hospitalized…
According to a story from The Columbian, twins Jill Noe and Whitney Bliesner had developed a deep bond during their childhood days growing up in Oregon. However, they did not…
According to a story from BBC, nine year old Sam Short has been trying an experimental drug for three years that aims to improve his growth. This is because he…
Anita Lawson was paying the doctor a visit for her annual checkup in 2003 when she was told something that surprised her: she had anemia. She had some issues with…
Emily Dover This is Emily Dover's story. At birth- perfectly healthy newborn, smaller than her siblings (8 pounds) 1 week- was having trouble sleeping and began crying in pain 4…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
According to a story from BioSpace, on June 7th, 2019, Londyn Wright became the first baby in the US to receive Zolgensma, a recently approved gene therapy treatment for the…
According to a story from princetoninfo.com, Sara Cooper was diagnosed last November with amyotrophic lateral sclerosis. Sara has had an active career as an event planner, marketing consultant, and real…
According to a story from Global News, Charleigh, the three year old daughter of Trevor Pollack and Jori Fales, was recently diagnosed with CLN2 Batten disease, which is a rare…
Emily Ventura has never met in-person another person living with progressive familial intrahepatic cholestasis (PFIC), her daughter’s life-threatening ultra-rare genetic disease. That will change on June 21st when Emily and…
According to a story from The Washington Post, Enrique Galvan has been subjected to relentless bullying and rejection ever since he first started school. The reason why? He was diagnosed…
On the weekend of June 7th through 9th, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation's Annual Educational Forum in Philadelphia, Pennsylvania on the behalf of…
According to a story from kdrv.com, cystinosis is a very rare disease that only affects about 500 people in the US. Two of those patients are Emma Suetta and Everly…
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