According to a story from Charcot-Marie-Tooth News, a recent meeting between the US Food and Drug Administration (FDA) and patient advocacy groups took place to discuss the future development of…
According to a story from the New York Times, Harvard University has recently called for the retraction of 31 studies authored by a cardiologist associated with the school. The cardiologist…
The Undiagnosed Diseases Network (UDN) is working to help patients with rare undiagnosed conditions find answers. So far, they have helped more than two hundred patients achieve a diagnosis. About…
October is Achondroplasia (Dwarfism) Awareness Month! Achondroplasia is a bone growth disorder that causes dwarfism. Dwarfism is defined as a condition of short stature as an adult. People with achondroplasia are…
According to a story from globenewswire.com, the biopharmaceutical company Orphazyme has officially endorsed a set of guidelines that outline how rare disease patient advocacy organizations and drug companies should interact…
According to a story from Pharma Voice, Dr. Scott Gottlieb, the current commissioner of the US Food and Drug Administration (FDA) has recently released a statement in regards to efforts…
When you’re first diagnosed with something like breast cancer, ovarian cancer or another rare condition there’s a million things racing through your mind and a million and one things to…
According to a story from the Washington Post, new cases of the unusual, polio-like disease called acute flaccid myelitis have continued to appear through the United States recently. There are…
"Five to 10 percent of all cancer is hereditary" - Adelsperger Genetic counselors can help you understand not only your own risk for developing cancer but the risk of your…
According to a story from BioSpace, the biotechnology company X4 Pharmaceuticals recently announced that the US Food and Drug Administration (FDA) has given Orphan Drug designation to the company's investigational…
According to a story from PR Newswire, a new program called The Lantern Project is working to provide a free testing program that allow doctors to more quickly diagnose patients…
US Congresswoman Lucille Roybal-Allard gave a recent speech in November raising awareness about a looming health crisis for US people. Nonalcoholic steatohepatitis (or NASH), she declares, is looming in the…
uBiome is holding a challenge that encourages people to submit proposals for a chance to win a grant. The challenge, called the Clinical Outcomes in Microbial Genomics Innovation Challenge, is…
According to a story from OncLive, the drug development company Karyopharm Therapeutics recently announced that the US Food and Drug Administration has granted Priority Review to the company's XPO1 inhibitor…
According to a story from news-medical.net, Verastem, Inc., recently announced that its drug COPIKTRA (duvelisib) was recently added to the National Comprehensive Cancer Network's (NCCN) guidelines for the treatment of…
After the 10th International Workshop on Waldenstrom’s Macroglobulinemia for researchers and clinicians, the IWWM10 International Doctor- Patient Forum will be held in the same place on the same day. If…
According to a story from PMLive, Leadiant Biosciences of Italy recently announced that its drug Revcovi has officially received approval from the US Food and Drug Administration. Revcovi was approved…
According to a story from Charcot-Marie-Tooth News, the continuously escalating cost of drugs in the United States is still plaguing rare disease patients and chronically ill people across the country.…
When it comes to rare diseases often one of the biggest hurdles is finding the right diagnosis. Tailoring treatment, and adjusting lifestyles can be difficult, but both are impossible if…
According to a story from mirror.co.uk, Lee and Charmaine Taggart of Kent are the parents of Martha, a six year old girl who was born with Angelman syndrome. Martha's diagnosis…
Getting access to medication can be a difficult and demanding process for patients. There are often a number of hoops to jump through, papers to sign, tests to go through…
According to a story from MD Magazine, researchers are using real-world studies, outside of the controls found in the clinical setting, to trace the impacts of multiple recently approved therapies…
In order to improve the lives of patients for any illness, we all know research is an essential step. We also know that the most accurate research is derived from…
The Noah’s Ark Foundation For Sickle Cell, an NGO based in Lagos, Nigeria, is working to support people with sickle cell disease. In a recent interview with the Nigerian Tribune,…
According to a story from CNN, a rare disease called acute flaccid myelitis has been cropping up in Minnesota lately, and six kids have been diagnosed with the illness since…
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.
