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.
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…
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 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…
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…
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…
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…
Previously approved for the treatment of narcolepsy, pitolisant (marketed under the brand name Wakix) may soon be leveraged for another rare condition: idiopathic hypersomnia (IH). Pitolisant is a histamine 3…
INT230-6, developed by clinical-stage biotechnology company Intensity Therapeutics (“Intensity”), is an investigational therapy comprising three moieties: cisplatin, SHAO-FA (a penetration enhancing molecule), and vinblastine sulfate. A moiety, in this sense,…
Also known as Richter’s Transformation, Richter syndrome is a rare and aggressive complication of chronic lymphocytic leukemia (CLL). When someone develops Richter syndrome, their CLL can transform into another rare…
The International Congress of Parkinson's Disease and Movement Disorders took place this year from August 27 to 31. During the Congress, researchers and other stakeholders from across the globe…
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…
Teegan is Kelly and Matt Olson’s youngest daughter, so when she began missing developmental milestones, her parents were on alert. After a variety of tests over the span of…
Currently available therapeutics may not be adequately effective in the fight to treat late-stage acute myeloid leukemia (AML) or myelodysplastic syndromes (MDS). Researchers and drug developers are working to identify…
Galila Yohannes’ parents, who originally hail from Eritrea, brought their family to Israel for a better life. And while they never would have expected what came next, this move likely…
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…
The U.S. FDA has approved two treatments for people living with idiopathic pulmonary fibrosis (IPF). These therapies—Esbriet (pirfenidone) and Ofev (nintedanib)—both work to reduce fibrosis, or scarring, in the…
© Copyright 2024 Patient Worthy
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.
