Chloe Fernandez is an 11-year-old with primary ciliary dyskinesia, and that hasn't stopped her from being an advocate for the disease, reports Los Angeles Times. When given several amazing opportunities…
A new effort to raise awareness and funding for rare disease is underway. SMA News Today reported that NORD, the National Organization For Rare Disorders, organized this campaign to challenge…
There is new hope for patients and their families suffering from spinal muscular atrophy (SMA) reported AOL UK News. SMA is a physically debilitating and aggressive disease, and now a new…
Emma and Tripp Mattingly share the same infectious personalities of energy and happiness, but they also share the same rare genetic disease known as LPIN1, reports The Lebanon Enterprise. Living…
New research shows that children can still inherit mitochondrial disease even if their mother never showed signs of the disease, reports ALN Magazine. It has been shown over time that…
There aren't many families like the Bradley's-- not just because they face the loss of their 10-year-old son who passed away recently due to brain cancer, but because of their…
Adam Murphy, a reporter for CBS46 learned of his mother's diagnosis of Progressive Supranuclear Palsy, PSP, in 2010 and decided to use his reporter platform to help her, originally reported…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
At first, 14-year-old Alec Hebblethwaite and his family thought he kept choking on his food due to eating too quickly or talking mid-bite, yet, after some time they learned he…
Social and lively teenager Cindy Redmond's life was forever changed when her friend's step-father blew an air horn directly in her face, damaging them forever, originally reported by Daily Mail.…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
A 23-year-old NBC news anchor received the words that everyone fears, "you have cancer". Boston Globe Media Partners reported the experience that young Natasha Verma faced upon her diagnosis. While it's…
It wasn't the Christmas 18-year-old Alex Leisenring and his family were expecting this year. While they received the white Christmas they had hoped for, they spent the holiday in a…
A huge deal is underway as Sanofi looks to acquire Bioverativ for $11.6 billion with hope to enhance and strength their rare disease presence, reports Genetic Engineering & Biotechnology News.…
It all started with extreme allergic reactions around her mouth when eating certain fruits, then overtime she grew to become allergic to just about everything, even her own tears and…
In a recent study, researchers at Stanford University School of Medicine successfully cured mice of cancer. Already, patients diagnosed with lymphoma are being sought out to undergo clinical trials with…
Originally reported by Columbia Daily Tribune, researchers from the University of Missouri have made huge strides towards treating, and maybe even curing, two fatal diseases: muscular dystrophy and Amyotrophic Lateral…
According to Live Science, a new Netherlands study shows that women who get breast implants are more likely to develop a rare cancer known as anaplastic large cell lymphoma, also…
According to Google experts, the top health related questioned in the UK in 2017 is, "what is cancer?" With rates of cancer spewing out of control these days, affecting 1…
According to EurekAlert!, covering a study conducted by Oregon State University, individuals living with rare diseases are more likely to experience a poorer quality of life. They are at high…
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…
Gene therapy is on the rise, and it just might be exactly what many children suffering from genetic disorders need to save their lives. Today reported that an amazing organization…
Doctors of semi-professional soccer player, Matt Dimbylow, believes he developed Parkinson's disease at the young age of 36-years-old due to a head injury he sustained playing the sport, reports Mirror.…
The Myra and Robert Kraft Family Foundation was established in 2016 creating an initiative to to bring together an alliance between the Harvard Business School with the Broad Institute of…
When Kristen Smedley learned her son, Michael, was diagnosed with retinitis pigmentosa, she decided she wouldn't sit back and watch it take away from her son's life, she would take…
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