According to a story from Religion News Service, Gurjot 'Jo' Kaur has developed a reputation as a potent civil rights lawyer. Her career was motivated by experiences such as ableism…
October 30, 2021 will be recognized as World Hypophosphatasia Day, a time dedicated to spreading awareness among the medical field and the general public about hypophosphatasia, a rare and potentially…
On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…
A rare disease diagnosis changes your life. As I look back on eight years of twin anemia polycythemia sequence and its impact on my girls, I also have to reflect…
According to a story from echolive.ie, ten year old Adam Terry from Cork, Ireland, has directly appealed to Micheal Martin, the Taoiseach (or prime minister) of the country in order…
According to a recent article from UTHealth Houston, a five-year-old suffering from a severe case of spina bifida has brought together a number of doctors to give her the…
At two years old, Charlotte Wilson, known affectionately as Lottie, has such a bright and happy smile. Her family, including her mother Lisa, feels lucky to still have her…
Written by Robyn Stacy-Humphries Wolverine, Spiderman, Wonder Woman, and Deadpool - superheroes most of us love. Why? They have superpowers and escape death by some type of genetic alteration. Humans…
Emmalyn Reese Hudson was born 11 years ago at 35 weeks gestation weighing in at 5 lbs, 7 ozs. and 18 inches long. Our beautiful baby girl was so tiny…
Patient Worthy recently had the privilege to view a selection of short films about rare disease at Biotech Week Boston. These films highlight the stories of families and patients as…
Kristin woke up the morning of her 19th birthday with a startling realization: she was unable to speak. It was hard to describe the feeling, but when she tried to…
Dave and Kendra Riley have a beautiful family: them and their daughters Eva, Kiera, and Olivia. Yet the family has faced some scary and difficult obstacles over the last…
In 1992, Elsa Burgos and her husband, living in Puerto Rico at the time, welcomed a new addition to their lives: their daughter Nicole. The pair were thrilled to have…
September will soon come to a close, but did you know that this month is also Ovarian Cancer Awareness Month? According to a story from MSN, Michelle Barrenechea, an EMT…
According to a story from MSN, Busola Omiyale's daughter Toriayooluwa was only nine months old when she could tell that something wasn't right. The girl had sickle cell disease, a…
Funding is a problem that many rare diseases face when it comes to research. Cholangiocarcinoma, also known as bile duct cancer, is no exception. Because of this, it is often…
Jeff was first diagnosed with systemic mastocytosis early in life, at age 16. The first sign that Jeff knew that something was off was when he developed urticaria pigmentosa, abnormal…
Angela Singletary is the proud mother of three children: Aidan, DL, and Angela. One of them sticks out from the rest - literally. DL is a foot and a half…
ABC News recently featured an article about Isabella Cristobal and Sergio Soto. They decided to get married shortly after learning that Sergio’s cancer had spread and he had only…
My daughter, Carson, was born in June 2020. I received a call 1.5 weeks later about Carson’s abnormal newborn screening. I was told it was most likely an error, but…
Written by Gina Baker This year Global Mitochondrial Disease Awareness week is September 19-25, but my family and I will continue to fight this battle for the rest of…
Namrah and Aslan Jalil, residents of Islamabad in Pakistan, recently interviewed with VICE World News describing their struggle to arrange for their four-year-old son, Aslan, to be brought to…
According to a story from News Nation USA, eight-year-old Lilly-Ann Woolliss of Immingham was diagnosed with phenylketonuria (PKU) when she was born. As a result, she must consume a diet…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Breast cancer is a result of a cell in the breast mutating and multiplying rapidly. There are over 275,000 occurrences of breast cancer in the U.S. each year. However, new…
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.
