Tyler Chambers, 9-years-old, suffers from scoliosis, with a 65 degree bent spine. His mother is fighting to get him the surgery he needs to rid away his intensifying pain, reports…
According to an article from Newswise, a team of researchers are studying tissue engineering for the repair of knee injuries such as a torn meniscus. The meniscus is the section…
NBCNews Chief Foreign Correspondent, Richard Engel, opened up about one of the hardest phone calls he ever had to receive-- the call where he received the diagnosis of Rett syndrome for…
On January 30th, pop singer Jordin Sparks' step-sister Bryanna Jackson-Frias lost her battle with sickle cell anemia, reported People. Complications surfaced that sent her to the ICU. Jordin posted to…
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…
According to a story from Cancer Updates, Research & Education, the Food and Drug Administration (FDA), recently approved the use of Trisenox injection in combination with tretinoin as a treatment…
Welcome back, Patient Worthians! This week, we have an opportunity for Parkinson's patients, and an update on an Amyloidosis app. We also have two stories of teenagers whose lives suddenly…
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…
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.…
In 1972 William S. Sly, first identified a rare, progressive and devastating condition, which came to be known as Sly Syndrome, now known as MPS VII. This syndrome affects almost…
According to an article at Clinical Lab Products, a new genetic test for alpha-1 antitrypsin deficiency was recently approved by the Food and Drug Administration (FDA). This certification is the…
According to a post from the National Organization of Rare Disorders, the organization has joined thirty-seven other patient and provider groups and organizations in opposition to the "Right to Try"…
According to an announcement from The Amyloidosis Research Consortium (ARC), the organization has launched version two of the My Amyloidosis Pathfinder (MAP) tool. The tool was developed as a way for…
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.…
According to a story from CBC News, doctors are beginning to research the mystery behind the unusually high prevalence of multiple sclerosis among the people of Saskatchewan in Canada. To…
Who said helping cure and treat rare diseases couldn't be fun?! Last week, Three Lake Partners - a venture firm that invests in healthcare and quality-of-life solutions for patients dealing…
The United Network for Organ Sharing recently altered the rules of the organ transplant system. Geography is no longer as crucial a factor in securing a needed organ. Some view…
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…
Michael Mauti, a linebacker for the New Orleans Saints, had been struggling with ulcerative colitis for years, and it was getting worse. The thought of eating become one of great…
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.…
Happy Groundhog Day, Patient Worthians! It might not feel like it, but spring is its way! This week, we have a story of a family who copes with the challenges…
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…
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