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.
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,…
Continue ReadingRare Community Profiles: Destroy Duchenne: How Elijah Stacy is Working to Improve the Lives of People with Duchenne Muscular Dystrophy
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…
Continue ReadingNew CDC Guidelines Address Hepatitis C Testing in Infants
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…
Continue ReadingASBMR-RBDA Symposium: Ilofotase Alfa Shows Benefits for Hypophosphatasia
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…
Continue ReadingPimavanserin Improved Severe Insomnia in Veterans Living with PTSD
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…
Continue ReadingDoctors Identify Coding DNA Variants that Could Cause Childhood-Onset Schizophrenia
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…
Continue ReadingMedication Adherence Low in Young Adults with Ulcerative Colitis (UC), Study Says
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…
Continue ReadingExpanded Approval Means Voxzogo Available for All Children with Achondroplasia
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…
Continue ReadingCeliac Disease Could Increase Risk of Rheumatoid Arthritis and Juvenile Idiopathic Arthritis
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,…
Continue ReadingRep. Valadao Introduces Resolution to Designate 11/12 as CJD Awareness Day
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…
Continue ReadingSniffing Out Prostate Cancer: How Dogs’ Olfactory Sense Can Train Neural Networks
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…
Continue ReadingA Michigan Mother is Raising KBG Syndrome Awareness After Son’s Diagnosis
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…
Continue ReadingTTX101 for Malignant Gliomas (Including Glioblastoma!) Earns Orphan Drug Designation
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…
Continue ReadingSAGE-718 for Huntington’s Disease Earns Orphan Drug Designation
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…
Continue ReadingIs It Time to Go to the ER for a UTI? Here’s What You Should Know
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…
Continue ReadingA 64-Protein Signature Could Tell Doctors Who Will Respond to Ovarian Cancer Treatment
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…
Continue ReadingPositive Top-Line Results Available in Imsidolimab for GPP
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…
Continue ReadingPatient Advocate with LEMS Writes Rap Anthem for Rare Disease Community
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…
Continue ReadingTogether They’ve Tackled Life, Love, and Huntington’s Disease
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,…
Continue ReadingFDA Denies Approval of Onpattro for Cardiomyopathy of ATTR Amyloidosis
Granite, marble, porcelain, quartz—all materials leveraged in the development of beautiful, durable countertops. When people are choosing what countertop material to use in their homes, they often consider factors like…
Continue ReadingThe Hidden Cost of Quartz Countertops: Silicosis
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…
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