Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
People in China who are living with narcolepsy will soon have access to a new therapeutic option to help them manage cataplexy or excessive daytime sleepiness (EDS) after the…
The 25th World Congress of Dermatology took place this year from July 3 to 8, 2023. During the Congress, stakeholders throughout the medical industry convened to discuss research, trends, and…
Two days. That’s all it took for Jill and Jeff Ackermann to watch their son’s condition mysteriously deteriorate. On Saturday, six-year-old Bryson was the energetic, athletic, and bright-eyed little boy…
Having a rare or uncommon condition can be undoubtedly overwhelming. The diagnosis comes with associated mental health, financial, physical, and social burdens that can weigh heavy on your mind. But…
In 2020, the U.S. Food and Drug Administration (FDA) granted Breakthrough Therapy designation to magrolimab for the treatment of newly diagnosed myelodysplastic syndromes (MDS). This designation is designed to expedite…
There are an estimated 10,000 rare diseases. A majority of rare diseases are genetically oriented. Because of this, we learn more about health and disease as we learn more…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Growing up, Jack Witzig saw how his father inspired others. His dad Don was a cross country and track coach at two different high schools. He motivated his students to…
Family gatherings can be fun, boisterous, and sometimes full of conflict. During one such event, Donnie Adams found himself intervening to break up a fight between two people. Although he…
When Chantel and Jason Funk learned that their son Bowin has adrenoleukodystrophy (ALD) in 2019, they thought that the questions about the future, and how to manage the condition,…
Marco and India Biviano felt like something bad was happening to their young son Luca. His stomach was distended and painful. Luca frequently developed chest infections that required round after…
If your child was sick, you’d do everything that you could to save them. Hayley Moore is no different. When her daughter Klarissa was born, Moore felt such a…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Currently, there are an estimated 10,000 known rare diseases (and counting). As we learn more about our genetic makeup, and how genetic alterations can cause disease, we continue to…
It’s no secret that our gut health plays a formative role in our overall health. Over the past decade, more and more studies have examined how the gut microbiome impacts…
An estimated 15% of people with sarcoidosis, a rare condition which causes granulomas to form throughout the body, develop neurosarcoidosis. This form, which is characterized by central nervous system (CNS)…
In June 2023, the U.S. Food and Drug Administration (FDA) approved the use of VYVGART Hytrulo for people living with generalized myasthenia gravis (gMG), a chronic autoimmune neuromuscular disease…
According to a July 11 article from Maaisha Osman, commercial-stage biotechnology company ADC Therapeutics has voluntarily halted enrollment for the Phase 2 LOTIS-9 study evaluating Zynlonta (loncastuximab tesirine-lpyl) and…
On the field at the University of Tennessee, defensive back (DB) Trevon Flowers was known for his intense gameplay, strong athletic ability, and defensive nature. He appeared in 46…
English-American guitarist, singer, and songwriter Peter Frampton is best known for his hit album “Frampton Comes Alive!” and his upbeat, immersive performances. But he is also known for his efforts…
Barrett's esophagus is a condition in which the esophagus, or the tube that connects the mouth to the stomach, becomes damaged, typically due to long-term exposure to stomach acid; this…
At first, Tammy Ross thought nothing about messing with her fingernail on her thumb. It had become ingrown; the pain and swelling were too much to deal with. So Tammy…
Despite the rising prevalence of nonalcoholic fatty liver disease (NAFLD), there is still a general lack of understanding as to how the condition affects long-term health. According to a publication…
An estimated 50% of people living with ulcerative colitis, a form of inflammatory bowel disease, experience moderate-to-severe symptoms that available treatments fail to control. An urgent need to defecate, bloody…
During the Vietnam War, the U.S. military sprayed a tactical herbicide called Agent Orange to defoliate forest areas. The goal was not only to destroy crops that could provide nourishment…
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