MonARC Bionetworks and the Pulmonary Fibrosis Foundation have partnered to bring the IPF community the PF Health app - a monumental partnership that will bring clinical research opportunities directly to…
Technology is hurting us. That's the claim made many times over the years. Smart phones may not have as many risks as some fear, but they can be a significant…
While the development of orphan drugs for rare diseases has skyrocketed in the last 30 years, Dr. Scott Gottlieb, Commissioner of the Food and Drug Administration is recently questioning the…
Lyme bacteria can survive a 28-day course of antibiotic treatment four months following infection by tick bite, according to a new study using a primate model for the disease. Despite…
The Spanish National Cancer Research Centre (CNIO) announced the discovery of a protein called RanBP6 as a regulator of epidural growth factor receptor (EGFR). The study, as originally printed in…
Originally reported by KVUE ABC, the race is on for the Rosenberg family to raise the funds that will benefit their 3-year-old child suffering from a rare brain disease known…
On December 11, Alexion Pharmaceuticals, Inc. released dose-ranging data from a recent clinical study involving treatment with ALXN1210, which is an investigational long-acting C5 complement inhibitor meant to treat sufferers…
The Canadian Fabry Association wants to create awareness for rare diseases and you can help! They want to get as many people to wear a Be Rare Be You tattoo…
Growing up, my brother and I had a fun playhouse in our backyard with a huge slide and swings. We had the best times on that playhouse, playing games together…
It was a Christmas miracle for the Garcia family as their infant quickly recovered and was discharged from the hospital to enjoy the holiday at home, reported DailyMail. 1-year-old baby…
Santa showed up early this year in a Chicago neighborhood, to the delight of dozens of children. However, his early visit to the area comes with an extra special purpose.…
Latest research from a University of Chicago team found that dynamic contrast-enhanced MRIs (DCE-MRIs) were much better in early detection of breast cancer than annual mammograms for patients with high-risk…
High school student, Molly Alter, fell limp while braiding her best friend, Jackie Acierno’s hair, and it was the heroic actions of Jackie to perform CPR that saved her life,…
Newborn baby Jada Elenbaas had to spend 287 days of her first year of life in the hospital. Jada was born with complete DiGeorge syndrome, also known as 22q11.2 deletion syndrome,…
Happy Holidays, Patient Worthians! As we celebrate the holidays this year, we take a moment to reflect on the things that matter most deeply to us. This week, we have…
An amazing 6-year-old boy from Bradford, who was diagnosed with a rare heart condition called LEOPARD Syndrome, creatively started a fund raising campaign revolved around Christmas and singing to raise…
London's renowned Great Ormond Street Hospital (GOSH) has hit a milestone with the construction of the Zayed Centre for Research into Rare Disease in Children. The building just recently reached its…
Everyone with Facebook surely remembers when people were posting videos of themselves having ice cold water dumped on their heads. But, does everyone remember what it was for? The Ice…
Reported by The Washington Post, six years ago Randall Jordan-Aparo was found dead after being sprayed down with a debilitating chemical when wrongfully placed into an isolation cell. According to…
Earlier this month, researchers at the University of Montreal found an encouraging way to improve treatments to cystic fibrosis patients. They discovered key molecules, known as quorum-sensing inhibitors, could be…
According to The Washington Post, on Tuesday the Food and Drug Administration, FDA, made history by approving a gene therapy for childhood blindness, which will change the lives of many…
Miracle workers at Queens University are working on a revolutionary method to treat patients with Lyme disease. Lyme disease is an infectious disease that springs from a tick bite's bacteria.…
Jay and Kathy Keller of Franklin, Idaho are getting creative this year with their donation efforts, reports WENY News. The Kellers are asking for people to write Christmas letters to…
Michele Holbrook is a runner-- if you spotted her jogging on the street, you wouldn't believe that her body was plagued by more than 20 tumors due to a rare…
Irish drugmaker, Shire, announced earlier this month it will bring new genetic disorder drugs to India, stepping up its worldwide presence. Shire is unique in that it's one of the…
© 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.
