"When only 100 people in the world share your child’s specific gene mutation, it is hard to find anyone who understands, including doctors." Rare diseases are at a disadvantage when…
Tristan Lederman's health started to take a turn at the beginning of 2017. Tristan lived at home with his family and depended on his family members and at-home caregivers…
Kinetic Kids is a nonprofit which was originally formed to keep children who needed physical therapy active outside of their actual physical therapy sessions by giving them the opportunity to…
Just Like You Dolls Just Like You Dolls is a family owned business based in Australia. They design dolls to match their child owner as closely as possible. This includes…
Earlier this month marked a solemn 34 years since the horrendous Bhopal disaster. The worst industrial disaster in human history killed over 3,800 almost instantly, and tens of thousands in…
Caregivers come from all walks of life but they share one common goal- taking care of someone they love who cannot fully take care of themselves. This may mean helping…
When a lot of people think of physical therapy, they think of rehabilitation to improve an injury or some type of ailment. However, the world of physiatry is much broader…
Growing up without a diagnosis is hard. In a world which frequents new scientific discoveries, you're still living as a medical mystery. When no one knows the answer, patients often…
Some estimates place the rate of preterm birth as high as 15 million babies each year. This describes a serious global health concern. Many of these babies experience neurological disorders…
As a teacher, It’s not unique to have a kid with a disability in your class. But sometimes it’s hard to know how to adjust your curriculum in order to…
According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time…
According to a story from news-medical.net, a team of scientists from Delaware have recently released a study in the journal BMC Bioinformatics. In this study, the researchers found that patters…
Although having a child with disabilities is no doubt stressful, the stress and worry does not necessarily lessen as the child grows older. As children with disabilities age towards adulthood…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
According to a story from polygon.com, Microsoft has developed a new Xbox Adaptive Controller that is tailored towards players that have reduced use of their hands and fingers. While there…
Content warning: discussion of ableism and eugenics A woman is suing the Japanese government over her forced sterilisation four decades ago. This is the first case to be brought against…
Recent news from Apple shows a new series of emojis coming with the next iOS update. The set intends to “better represent individuals with disabilities.” To accomplish this, Apple partnered…
According to a story from Wave Newspapers, Danielle Guinn, a woman diagnosed with cerebral palsy and epilepsy, is not letting her disability slow her down, and is currently participating in…
Maddie Holt from Everett Washington is a 5-year-old with severe disabilities. She can barely hear or see, and she certainly can't walk or talk, reports Maine Public. Unfortunately for her,…
"Ok, well first of all...I know nothing. But if your kids are anything like me, they're going to break a lot of toilets!" Those are the starting words writer and…
According to a story from The Irish Times, the South Tipperary General Hospital issued a second apology in court after providing insufficient care to a girl named Katie Manton, who…
Duke Health just reported that in a recent study, children with cerebral palsy may show improvements from an infusion of their own umbilical cord blood. Recently, a clinical trial including…
London specialists at the King's College hospital believe they should take an 11-month-old baby Isaiah suffering from multiple diseases off life support to avoid any further pain, reported The Guardian.…
Margarita Matias could not believe her eyes when she walked into the newly renovated bathroom. Her old bathroom was far from ideal, and often leaked. The new arrangement is optimized…
I am always incredibly inspired by the people that don’t allow their rare diseases to prevent them from doing what they love. Whether it’s been Charity Tillemann-Dick with opera or Olivia…
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