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.
Shortly after Laura Colby was born, she was diagnosed with a rare metabolic disorder known as maple syrup urine disease (MSUD). Normally, our body has an enzyme complex that breaks…
According to reporting from WJTV, there have been 34 cases of West Nile Virus in humans diagnosed in Mississippi this year. The health department reports that cases were found in…
Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
Two years ago, the Lazo family was shocked to learn that daughter Cassie, then seven, had cancer. She was diagnosed with Wilms’ tumor, a rare form of childhood kidney cancer…
An estimated 58 million people worldwide are living with Hepatitis C, a liver infection caused by the hepatitis C virus (HCV). This includes 3.9 million people living with chronic hepatitis…
When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
The American Society for Bone and Mineral Research (ASBMR) and Rare Bone Disease Alliance (RBDA) held the annual Symposium on Rare Bone Diseases this year on October 12. During…
Post-traumatic stress disorder (PTSD) is a mental health disorder triggered by experiencing a frightening, terrifying, and/or traumatic event. People living with PTSD often experience flashbacks and anxiety that can sometimes…
42o words (source - 2% match) vs. 479 words (mine - 1% match) Have you ever had a lingering itch? An itch that just wouldn't go away, no matter what…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Aminosalicylates are a type of drug often used to manage inflammatory bowel diseases (IBD) like ulcerative colitis (UC). The Crohn's & Colitis Foundation explains that these therapies, which contain…
In the past, the U.S. Food and Drug Administration approved Voxzogo (vosoritide) for children with achondroplasia who were five years old or older. Voxzogo, developed by BioMarin Pharmaceutical, is…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Only around 350 to 500 people in the United States are diagnosed with Creutzfeldt-Jakob disease (CJD) each year. Unfortunately, this disease often causes rapid cognitive decline and physical deterioration,…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Over the past 20-30 years, there have been changes in the way that the medical and scientific community views shaken baby syndrome (SBS). More recent research suggests that certain…
Receiving a rare disease diagnosis can be challenging. It can be even more challenging when there isn’t a lot of information to lean back on. While there has been…
Right now, there is an urgent need to identify and develop treatments for people with malignant gliomas, including glioblastoma. Unfortunately, there are limited effective treatment options; these cancers are…
Currently, there are no FDA-approved treatments designed for cognitive impairment related to Huntington’s disease. However, to improve the lives of those affected, additional research and therapeutic development are urgently…
Urinary tract infections, or UTIs, are infections that affect the urinary system, including the urethra, kidneys, and bladder. The majority of UTIs are caused by E. coli bacteria (or other…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
In early October 2023, the clinical-stage biotechnology company AnaptysBio, Inc. shared, via a news release, that positive top-line results were available from the Phase 3 GEMINI-1 study. Within the…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
In 2018, the U.S. Food and Drug Administration (FDA) approved Onpattro (patisiran) as a treatment for polyneuropathy in people with hereditary transthyretin-mediated (ATTR) amyloidosis. Onpattro is an intravenously administered,…
© 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.
