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.
The passage of the Orphan Drug Act was an important step in creating an environment that supports rare disease research and drug development. This Act created Orphan Drug designation,…
Each year, students at Carteret Community College in Morehead City, North Carolina participate in the “Great Strides” Walk for Cystic Fibrosis. “Great Strides” is the Cystic Fibrosis Foundation’s largest fundraising…
Walt McGrory always knew that he wanted to play basketball. So when he became a student at the University of Wisconsin-Madison (UW-Madison), he joined the Badgers as a walk-on. In…
Our blood has different clotting factors, or protein, that helps clot and stop bleeding after injuries. But when you don't have enough of these proteins, the blood can't clot…
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…
In February 2023, I spoke with Dr. Allen Davidoff of XORTX Therapeutics Inc. (“XORTX”) about the company’s commitment to developing therapies for people living with progressive kidney disease. We…
Champlain Valley Union (CVU) High School students are running on a high this season after the school's basketball team clinched its first ever state championship win. The CVU RedHawks…
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…
On April 23, 2023, people around the globe will celebrate Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day. April 23 marks the 17th anniversary of when scientists shared that they had…
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…
When Al and Terry Rezsel were married, they took their vows seriously: in sickness and in health. So when Terry was diagnosed with breast cancer in 2010, after 10 years…
When Alexander Barron (9) was first born, doctors told his parents that he would likely never walk. In fact, said doctors, Alexander would probably not be very independent at all…
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 International Association of Fire Fighters (IAFF) shared in March 2023 that firefighters in Ontario would now have presumptive pancreatic cancer and thyroid cancer coverage. Presumptive coverage means that…
Have you ever heard of the Orphan Drug Act? This Act helped stimulate and advance the development of, and research into, therapeutics for individuals living with rare or underserved conditions. In…
For as long as he can remember, Geoff Rhyne has loved food - especially when he gets to cook it. After all, it was this passion and creativity that led…
Revolo Biotherapeutics was founded with one specific goal in mind: to benefit people living with autoimmune and allergic diseases by creating novel, life-changing therapeutics that induce long-term remission. They…
Porphyria refers to a group of rare disorders that cause issues with the production of heme, which is part of what makes up hemoglobin (a protein in your red blood…
Historically, mesothelioma has been difficult to treat. Although treatment options exist, the cancer tends to respond poorly which results in a higher mortality rate. Improving patient care and outcomes (such…
Let’s start with a little vocabulary lesson. Today’s word? Biomarker. A biological marker, or biomarker, refers to some sort of measurable indicator of disease. For example, blood pressure, cellular gene…
The first few years of Saylor Baysden’s life involved a good deal of medical confusion. Her family pursued testing, leading to two diagnoses in 2020-21: autism and epilepsy. But her…
When the man in his 60s first hurt his leg, he wasn't too worried about it. He had cut his leg open on the door to his caravan and, like…
Children all across the globe enrolled in a study to evaluate Upstaza, a gene therapy medication, for the treatment of aromatic L-amino acid decarboxylase (AADC) deficiency. As part of their…
Medical research is crucial in better understanding diseases and discovering novel treatment options. Unfortunately, there is often one large barrier to research: funding. This is especially true within the rare…
In late February/early March 2023, Corby Davidson had some news to share. Normally, as a longtime host on The Ticket—a sports radio station—Davidson’s discussions were rife with the latest…
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