Lynch syndrome is a condition that increases the predisposition for certain cancers. People with Lynch syndrome should undergo frequent cancer screening for early diagnosis and treatment. But if Lynch syndrome…
Jessie Slater built her name in the Duluth, MN news scene; she acted as a news anchor, as well as a producer, at KBJR-TV from 2017 to 2022. After stepping…
It can be frightening and overwhelming to receive a rare disease diagnosis—and especially so if that rare disease is still poorly understood. When the Borofka family learned that their son…
Throughout her seventeen years alive, Daisha Felps has learned to face obstacles with resilience and strength. And obstacles come around more than she would like. You see, Felps has sickle…
An estimated 1.3 million people across the United States, and 30 million people globally, live with familial hypercholesterolemia (FH). This rare inherited form of high low-density lipoprotein (LDL) cholesterol remains…
617 words (source - 3% match) vs. 452 words (mine - 4% match) As our healthcare field continues to innovate and grow, we have seen more conversations regarding gene therapy…
As many people in the rare disease community know, it can be difficult at times to galvanize support for improved drug development. Many larger pharmaceutical companies may be hesitant to…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
370 words (source - 3% match) vs. 496 words (mine - 2% match) GEENIE can be used to develop in vitro and in vivo delivery mechanisms for drugs, gene editing…
The International Pemphigus and Pemphigoid Foundation is holding its 2023 Patient Education Conference from October 27-29, 2023. Since 2020, this conference has been held virtually online, and this format will…
The ocean is my favorite place in the entire world. When I see it—its immensity, its beauty—I feel immediately at home in the world. I believe that everyone should have…
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…
Jimmy Buffett survived a 1994 plane crash that was the inspiration for his song “Live Like It’s Your Last Day." According to an obituary on his website, Jimmy, 76,…
According to a story from Pharma Times, the biopharma company EsoCap has recently announced that it has finished enrollment for its phase 2 clinical trial. The trial includes patients from…
According to a story from The People's Pharmacy, a Senate report from 2018 highlights how opioid manufacturers regularly donate large sums of money to professional organizations and patient advocacy groups.…
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…
As reported by MSN, researchers have discovered that the blood vessels feeding aggressive brain tumors can be useful. The blood vessels have receptors that contain nanoparticles that can be…
The Phase 3 LITESPARK-005 trial sought to understand whether Welireg (belzutifan) was effective in treating advanced renal cell carcinoma (RCC) when compared to other treatments, such as everolimus. According to…
This year, September 17-23 is being recognized as Balance Awareness Week. Organized by the Vestibular Disorders Association, a Patient Worthy partner organization, the goal of this campaign is to help…
The month of September is recognized as National Sickle Cell Awareness Month in the US. This is a time to spread awareness about sickle cell disease among the general public…
In the United States, the FDA grants Orphan Drug designation to drugs or biologics that are intended to treat, diagnose, or prevent rare conditions. A rare condition is one…
Retinoblastoma is a rare cancer that begins in the retina, or the sensitive lining in the back of your eye. While it can affect people of all ages, it is…
245 words (source - 6% match) vs. 386 words (mine - 4% match) In the European Union, Orphan designation is granted to therapies intended to treat or use for a…
The 2023 Annual Meeting of the Myotonic Dystrophy Foundation took place from September 7-9 this year. During the meeting, stakeholders gathered in the nation's capital to discuss research, trends,…
As many people within the rare disease community know, a rare disease diagnosis can come with a significant financial burden. Additionally, the costs, treatments, equipment, and other needs are not…
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