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…
A recent article in the American Association of Nurse Anesthetists AANA Journal describes some possible side effects of anesthesia on patients with Lyme disease. Keep reading to learn more about…
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…
New evidence suggests that home care agencies are not giving Medicare assistance to chronically ill people that legally qualify for it, according to an article from wuwf.org. Take the case…
Tessa Jowell, former Labour party cabinet minister, delivered a moving speech to the UK House of Lords last week. The speech largely concerned her battle with glioblastoma, a rare brain cancer.…
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…
It's a fight they didn't choose, but it's a fight they have to face. Individuals diagnosed with sickle cell expressed how much they have to do to get the bare…
According to a story from dailyhealthneeds.com, long term, regular use of protein pump inihibitors (PPI) can majorly increase the risk of contracting stomach cancer. PPIs are commonly used to treat…
Originally reported by the Vancouver Sun, children from Langley B.C. are standing up to request access to a potentially life-changing drug as they face the day to day pain onset…
A new fundraising challenge is sweeping all social media platforms once again for amyotrophic lateral sclerosis (ALS), first reported Mom.me. Back in 2014, the ice bucket challenge was a wild success, being…
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.…
Last month, the pharmaceutical company Sarepta Therapeutics announced the long awaited results of a study that measured lung function in patients with Duchenne muscular dystrophy (DMD) after they took eteplirsen,…
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