It's a good time to check in on your eye health because January is Glaucoma Awareness Month! More than 3 million people in the United States have glaucoma - and…
Most disabilities in Pakistan are caused by three diseases: Spinal Muscular Atrophy, Spinal Cord Injury, and stroke. With this in mind, a group in the country’s capital has launched the…
According to a story from the Murray Valley Standard, Lucia's parents Julie and Peter knew within weeks after her birth that something was wrong with their newborn baby's head. Although…
January is Thyroid Awareness Month! It may be difficult to find time to learn a little more about your body and health tips - but since it's Thyroid Awareness Month,…
Living with the rare condition subglottic stenosis is never easy, especially when you're trying to keep up with your little boy. Caledon Enterprise reported that Emily Rogers does just that. She…
David Fogel's aunt was diagnosed with an advanced stage of stomach cancer when she was just fifty-six years old. Constantly dealing with severe pain and the side effects of treatment,…
Out-of-pocket expenses for rare disease are astronomical, and the Ministry of Health (MOH), is taking time to find a more positive way to help benefit children and their families burdened…
According to an article from Vanguard, only a year after Pat and Ken were married, Ken was diagnosed with multiple sclerosis. He was 29 years old. They had planned to…
A phase three clinical study is beginning for a new glioblastoma treatment. The new drug is called VAL-083 and is specially designed for treatment of late-stage glioblastoma. The study will…
Everyone is guilty of blaming back pain on stress stemming from work and life in general, but there becomes a point when one has to realize something might just not…
According to a story from wqad.com, transplants are responsible for saving thousands of lives. Often, transplants are the last resort in diseases that have become to severe to treat effectively.…
On the pages of the Abby Grace Foundation website, you will find over twenty beautiful pictures of different children. Most of the children are smiling. One looks into the camera…
25-year-old Zoey Wright is a real force of nature! Having been diagnosed with the rare disease ulcerative colitis she found herself dependent upon a colostomy bag, yet that didn't stop…
According to a story from Oklahoma's Nursing Times, Lori Garman, a scientist at the Oklahoma Medical Research Foundation, was selected for The Foundation for Sarcoidosis Research Fellowship Program Award. The…
According to an article from seattletimes.com, a homeless man's fight with cancer may actually improve his dire circumstances. Alan Brooks, a homeless man who was down on his luck, had…
The FDA approved a human study to be conducted by Swedish Orphan Biovitrum AB to treating mucopolysaccharidosis type lllA patients with a new drug called SOB1003, reported European Pharmaceutical Review. Not only…
Scientists in the UK are hopeful that they have discovered a new tool in the battle against brain cancer. The surprising solution is a virus. Ten patients in the UK…
According to a story from IBD News Today, the Food and Drug Administration (FDA) has just issued approval for the pharmaceutical company Immunic Therapeutics to move forward with Phase II…
The holidays are a little extra special for best friends Diana Caldon and Stephanie Smith. As optimistic cancer survivors, these two refuse to let holidays get away from them and…
January is National Birth Defects Prevention Month! A birth defect is defined as a problem that happens while a baby is developing in the mother's body. Most birth defects happen during the…
The Alabama Rare Disease community has come together to host a special week in honor of the upcoming date February 28th, 2018, which is now the official International Rare Disease…
When Terry Jo Bichell learned her son was diagnosed with Angelman syndrome, but little knowledge existed on the disease, she decided to get her PhD and do research herself, reported…
According to a story from PR Newswire, the pharmaceutical company Biohaven announced that they have received clearance from the Food and Drug Administration (FDA) to begin work on its clinical trials…
Ded Rranxburgaj, 48, currently living in Southgate, Michigan is being threatened with deportation, although his wife suffering from multiple sclerosis, reported MSN News. While fighting the deportation from every angle, Ded…
Patients suffering from the rare blood disease, hemophilia, deal with daily demands of their treatment. A recent study supports self-infusion for these patients, reported Harrison Daily Times. Self-infusion is when…
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.
