The TSC Alliance® first began as a grassroots organization, founded by motivated mothers whose children had been diagnosed with tuberous sclerosis complex (TSC), a rare genetic disease. Since its founding,…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
My story starts with me being a normal, healthy kid. Or was I? My parents would’ve said so, and so would I, I think. I just wasn’t very strong or…
On October 30-31, 2021, the Periodic Paralysis Association (PPA) hosted the Periodic Paralysis Conference in Orlando, FL. This event was an opportunity for patients to meet one another, share experiences,…
On October 27, 2021, the National Organization for Rare Disorders (NORD) hosted an informational webinar titled "Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profits." This webinar was the…
Written by Rod Cisneros Like many people, I keep a daily journal. I use it to document my everyday thoughts and I even include advice for family members who might…
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…
When Shelby Sparks was just five months old, she began having grand mal seizures. Throughout her early years, her family just believed that their daughter had severe epilepsy. Then, when…
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…
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