The United States Food and drug Administration recently announced its decision to grant a priority review. The privilege of expedited process, according to a press release, falls to AstraZeneca and…
According to a story from Chronicle Live, a medical team from Newcastle in the UK will travel to the Kerala province in southern India to treat patients with hemophilia. The…
According to NBC Right Now, the liver disease advocacy organization called The American Liver Foundation is launching an online platform designed to pair liver disease patients to clinical trials. The website,…
According to an article from VCU Massey Center's blog, a team of researchers from the VCU Massey Cancer Center have successfully discovered a pair of genes that could be essential for…
Rare in Common, a new monthly podcast which features stories about patients with rare diseases, made its debut on Rare Disease Day, February 28th. The podcast's goal is to raise awareness and…
A story from Charcot-Marie-Tooth News highlights the necessity for genetic testing and a physical examination prior to chemotherapy in order to prevent nerve damage in people with asymptomatic Charcot-Marie-Tooth disease…
According to a story from SMA News Today, a recent study has demonstrated that the parents of children with spinal muscular atrophy are often skeptical about enrolling their kids in…
Clinical trials of a potential gene therapy treatment for Duchenne muscular dystrophy (DMD) have been put on hold after concerns emerged about the safety of the procedure, reports Genetic Engineering…
While learning about cancer at a molecular level while being a medical student, Omar Salman from Virginia Tech Carillon School of Medicine learned much more firsthand when he was diagnosed…
Donna Keck has multiple sclerosis (MS). She's 61-years-old and has lived a life full of health complications, reports Chicago Tribune. Nevertheless, Keck battled through these challenges and eventually founded a grounded…
According to an article from Righting Injustice, a recent study suggests that TNF inhibitors may increase the risk of rare cancers in pediatric patients. The study recommends that children that…
The EveryLife Foundation for Rare Diseases hosted a panel discussion on Right to Try Proposals, as part of their 2018 Legislative Program for Rare Disease Week on Capitol Hill. What…
According to a story from biopharmadive.com, the Swiss pharmaceutical company Novartis has entered a partnership with researchers from the engineering and applied sciences school at Harvard University. The team will…
An advocacy group for people with Pompe disease in New Zealand has criticised the government for failing to uphold an election pledge, reports Scoop Independent News. Candidates from all major…
One of the greatest gifts of being a kid is imagination. When you're a kid, anything is possible and even the hardest times can turn into something so much better…
According to a story from curetoday.com, a recent study indicated that many patients with uveal melanoma reported having unmet psychological and informational needs, particularly in the first several months after…
Ashley Moore survived cancer. For many people, that’s enough. Moore, however, chose to give back in a surprisingly direct and immediate way. She decided to become a nurse. Keep reading…
We hope that everybody is having a great Easter, Passover, or first taste of spring! This week we have a story about sisters with Batten disease who are finally being…
According to a story from cancercompass.com, a recent study has demonstrated that income level is a significant factor in determining survival for patients with anal cancer. In general, the study…
According to a story from medicalxpress.com, a recent study suggests that cognitive deficits that can occur as side effects of targeted brain cancer drugs could be successfully reversed with therapy.…
According to a story from GlobeNewswire, the biotechnology company argenx announced recently that its investigational therapy ARGX-113 was granted orphan drug status by the European Commission. This designation is based…
The disease may be daunting, but it won't stop young, determined woman Ellis Kerton. According to LincolnshireLive, Ellis learned when she was 19-years-old that she was positive for Huntington's disease.…
According to a story from the Nottingham Post, the family members of brain cancer patients are putting their time and money towards the funding of a cutting edge MRI scanner…
According to a story from Everyday Health, The U.S. Food and Drug Administration (FDA), has recently approved a new drug for the treatment of recently diagnosed patients with Hodgkin disease.…
According to a story from Mirror Online, 38-year-old Laura Cartner had been complaining of severe headaches and seemed to be losing some of her coordination. She also had a past…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
