Losing a child has to be one of the most heart-wrenching experiences a family can encounter, yet losing a child when it could have been prevented is even more devastating.…
According to a story from the Clarion Ledger, surgeons at the University of Mississippi Medical Center are now trained to conduct a minimally invasive procedure to relieve the symptoms of…
According to a story from pharmavoice.com, the pharmaceutical company Cadent Therapeutics has announced the beginning of the Phase I clinical study for its drug candidate CAD-1883. The therapy is a…
According to a story from EurekAlert!, scientists from UCLA have developed a new method of delivery for gene therapies called nanospears. These structures could allow for more accurate and precise…
According to a story from Teen Vogue, Midnight Sun, a new film starring Bella Thorne, is slated for release on March 22nd, 2018, is a romantic drama whose central character,…
Thanks to a local physician’s group in Baton Rouge, patients with amyotrophic lateral sclerosis (ALS) no longer face lengthy drives to receive treatment. The clinic serving the Baton Rouge area…
According to a story from BioSpace, the U.S. Food and Drug Administration has given Fast Track designation for nintedanib, which is undergoing testing for the treatment of systemic sclerosis with…
Primary immunodeficiency diseases account for hundreds of rare and chronic diseases. In children, this may mean that their immune system is non-existent or doesn't perform as expected. To learn more…
Much has been said about the way in which social media is affecting society today. Recently, many of the remarks have been negative. Yes, it has been used by some…
According to a story from raredr.com, The U.S. Food and Drug Administration (FDA) has recently approved Hizentra as a maintenance therapy for patients with chronic inflammatory demyelinating polyneuropathy. Hizentra is…
For most people, sharing a bathroom with a stranger represents an unpleasant thought. It’s just sort of uncomfortable. For 14-year-old Holly Aspinall, however, it's a real danger. Holly suffers from…
According to a story from raredr.com, the FDA had to order the cessation of Phase II/III trials for the microdystrophin transfer therapy SGT-001, which was in development for the treatment…
A “Right to Try” bill is currently being discussed by Congress. Advocates on both sides of the story present valid points to either pass or stop the bill. That’s why…
In a previous article we discussed what the Right to Try bill is, and what it’s current status was in the US Congress. It recently failed to pass in the…
A team lead by geneticist Christopher Gregg from the University of Utah conducted a study on elephant genes that discovered why elephants don't get cancer, reported by News 4 Tucson.…
Recent research by a team at University of Cambridge suggests that a patient’s skin cells could be the key to treating multiple sclerosis. Reprogramming one’s own skin cells, the research…
According to a story from BioPortfolio, a recent study claims the Morgellons disease, a condition that has been shrouded in confusion and controversy, is not a delusion as some prior…
According to BelfastLive, Darren and Danielle Gibson, the parents of little six-year-old Sophia battling Dravet syndrome, traveled out of the country in search of the care she needs. For the…
According to a recent study, low copper levels could have a hand in leading to Charcot-Marie-Tooth disease, Charcot-Marie-Tooth News reports. Charcot-Marie-Tooth disease (CMT) is a neurological disorder that affects the…
According to a story from LiveScience, nine dentists and dental workers in the state of Virginia have been diagnosed with idiopathic pulmonary fibrosis, a rare and dangerous lung disease. All…
According to a story from The Globe and Mail, doctors were baffled after four young women who had a deadly and rare type of ovarian cancer were saved with an…
Spinal muscular atrophy is both rare and deadly. It’s uncommon enough that most people never worry about it-- but the consequences that happen if it goes undetected are devastating. That’s…
Happy St. Paddy's everybody! While most people are putting on their green clothing to celebrate the holiday, some communities of rare patients have other exciting happenings in mind. This week,…
New technology always peeks out from around the corner. Modern medicine chugs along just fine, but some people think precision medicine could be the future. Precision medicine is an individualized,…
According to a story from Central Texas News Now, a four-year-old girl with an extremely rare form of mitochondrial disease got her wish to see snow. The girl, Scarlett Landry,…
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.
