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.
Prior studies have found a correlation between inflammatory bowel disease (IBD) and colorectal cancer; those with IBD are at an increased risk of developing this cancer compared to the…
When Jordan Lambropoulos was younger, she seemed to always be ill. She struggles to remember a time in her childhood where she would characterize herself as “healthy.” Even doctors…
In a mid-November 2022 news release from biopharmaceutical company Apexigen, Inc., the company shared that positive interim results were available from a Phase 2 study evaluating sotigalimab, in conjunction…
There are a number of risk factors associated with the development of inflammatory bowel disease (IBD). These include being younger in age, being Caucasian or of Ashkenazi Jewish descent,…
The American Society of Nephrology held its annual Kidney Week from November 3-6, 2022. During this week, multiple stakeholders within the nephrology sphere met to discuss trends, clinical care…
Currently, the standards-of-care for advanced/metastatic (stage III or IV) melanoma include immunotherapy, targeted therapy, and radiation. Some patients are given anti-PD-1 inhibitors. However, only around 20-30% of those living…
At the moment, there are two FDA-approved treatment options for people with idiopathic pulmonary fibrosis (IPF). However, given the needs of patients, it is necessary to develop additional therapeutic…
In a mid-November 2022 press release from biopharmaceutical company CANbridge Pharmaceuticals, Inc. (“CANbridge”), the company shared that its therapeutic option CAN106, which binds to and neutralizes C5 in the…
Rare diseases are, by their nature, rare—and because of this, it can be difficult to spur drug development. The FDA worked to overcome this through the creation of the…
Clinical trials are a crucial part of learning more about certain diseases, as well as better understanding the impact of various therapeutic options. For example, a clinical trial can…
Before you read, don't forget to check out Part 1 of our interview! In Part 1, we discuss Ronya's story, genetic counseling, and why she chose to launch DNA in Color.…
The current standards-of-care for those with Duchenne muscular dystrophy (DMD) include corticosteroids, immunosuppressive treatments, physical therapy, and occupational therapy (among others). Gene therapy has the potential to change the treatment…
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…
Hypoxic ischemic encephalopathy (HIE) is a type of brain dysfunction or brain injury that occurs when the brain is deprived of oxygen during fetal or neonatal stages. Treatment options are…
Unfortunately, life has not always been kind to Zahid Bashir and Sobia Qureshi. The couple lost two children to Pompe disease, a rare genetic disease caused by GAA gene mutations.…
Those living with diseases like Pompe disease and McArdle disease have genetic mutations which prevent their bodies from adequately breaking down glycogen, a type of complex sugar found at…
Diffuse midline glioma (DMG) refers to a rare and extremely aggressive brain tumor that is most common in children. Chemotherapy and radiation are the current standards-of-care. Unfortunately, even with…
Are there therapeutic options for patients living with unresectable (inoperable) pancreatic cancer? According to an article in MedScape, researchers sought to understand whether sunitinib or a combination of peptide receptor…
At 45 years old, Tiffany Wedekind has embodied a sense of gratitude. Each day, she wakes up happy to be alive – and aims to bring that happiness to others.…
In the past, there have been a small number of studies exploring the connection between sickle cell disease (SCD) and craniosynostosis. More recently, researchers sought to understand whether there was…
Research has shown that up to 70% of individuals who undergo stem cell transplantation experience organ damage within just a few months. Many develop graft-versus-host disease (GvHD), a complication in…
Week 13 of the NFL marks the onset of “My Cause My Cleats,” an annual initiative that empowers players to reveal and share their passions beyond the game. This year…
Cushing’s disease (or Cushing disease) occurs when a benign pituitary growth or tumor leads to the overproduction of adrenocorticotropic hormone (ACTH). As ACTH is overproduced, the body also begins…
To those within the rare disease community, it is no surprise that therapies and drugs can sometimes be exorbitantly expensive. However, Spain’s National Markets and Competition Committee (CNMC) is…
Currently, the standard-of-care for individuals living with hemophilia B is intravenous factor IX infusions (prophylaxis). These infusions can be time-consuming, require adherence to a strict schedule, and may not…
© 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.
