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.
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…
Continue ReadingUnderstanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes
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 Mental Health Counselor Discusses His Life with Narcolepsy
₹17.5 crores—or $2,102,128. That's the cost of medication for a young boy named Kanav, who lives in Najafgarh, a town in the Southwest Delhi district. Kanav is living with…
7-year-old Isla Edwards suddenly found herself struggling to see. Her vision became fuzzy when trying to focus on objects at a distance. Her parents assumed this meant Isla needed…
Continue ReadingFamily Learns of Daughter’s Batten Disease After Routine Eye Exam
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…
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: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma
When young Emmett Cordes initially complained of knee pain, his mother attributed it to his active nature. However, as the pain persisted, a visit to the doctor and subsequent…
Continue ReadingSix-Year-Old with Hemophilia A Creates Comic Book to Educate Others
Advancing patient outcomes hinges on the development of targeted treatments, particularly in conditions with grim prognoses such as small cell lung cancer (SCLC), which typically has a life expectancy…
Continue ReadingA Combination of Benmelstobart, Anlotinib, and Chemotherapy Improves Survival Rates in SCLC, Study Suggests
Currently, neoadjuvant chemotherapy is a key approach in treating ovarian cancer. Neoadjuvant chemotherapy aims to reduce tumor size, allowing for surgical removal following three cycles of chemotherapy. Additional chemotherapy…
Continue ReadingIMUNON’s IMNN-001 Shows Promise in Ovarian Cancer Treatment
Barrett's esophagus (BE) is a condition in which the cells in your esophagus undergo a transformation, becoming more like intestinal cells. Although doctors aren't entirely certain why this change…
Continue ReadingDoes Antireflux Surgery for Barrett’s Esophagus Change Esophageal Cancer Risk?
Clostridioides difficile (C. diff) is a contagious bacterium that causes colon infections. People with C. diff infections (CDI) experience various symptoms, such as diarrhea and colonic inflammation, and in…
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 ReadingWhen Lung Cancer Occurs in Non-Smokers: An Exploration
Clinical trials are essential for evaluating the safety, efficacy, and tolerability of various therapies, as well as their impact on the patient population. According to a recent news release…
Continue Reading120 Participants Enrolled in Denifanstat-Bevacizumab Trial for Recurrent Glioblastoma
Dupixent (dupilumab) is currently the first and only FDA-approved treatment for eosinophilic esophagitis (EoE) in people ages 12 or older who weigh at least 40 kg (88.18 pounds). The…
Continue ReadingPriority Review Granted to Dupixent sBLA for EoE in Children Ages 1-11
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 ReadingThe Relationship Between Gut Bacterium and Lupus Nephritis
Sara Kear and Jake Kaufman always knew that they wanted to start a family. So they did, welcoming into the world their beautiful children: Lola, now age 3, and Mills,…
Continue ReadingHope With Lo: Raising Awareness of Zellweger Spectrum Disorder
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: Dr. Brian Koffman Discusses the Complexities of Immunization for People with CLL/SLL
During her postdoctoral studies, Dr. Geneviève Bernard first discovered the gene responsible for 4H leukodystrophy (also known as 4H syndrome), a rare disease affecting the central nervous system. Now,…
Continue ReadingRI-MUHC Team Develops First Mouse Model of 4H Leukodystrophy
In 2001, Ebtesam Al Shehhi was 23 years old and looking forward to welcoming her first child into the world. When random symptoms began appearing, she first wondered if…
Continue ReadingEmirati Woman with NMOSD Improved Significantly on Ravulizumab
Historically, it has been challenging to mobilize drug development and research within the rare disease sphere. Given the smaller community sizes, as well as a general lack of profitability,…
Continue ReadingBDC-1001 Granted Orphan Drug Status for Gastric Cancer
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 ReadingWoman Hopes that Joining Clinical Trial for Follicular Lymphoma Will Save Her Life
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…
Continue ReadingRare Community Profiles: Living with Gratitude: How Kate Remained Positive Through Her Two Battles with Glioblastoma
Previously, the FDA has approved Jardiance (empagliflozin) as a treatment option for adults with heart failure and to manage blood sugar in people ages 10+ with type 2 diabetes.…
Continue ReadingJardiance is Now FDA-Approved for Chronic Kidney Disease (CKD)
In July 2023, the U.S. FDA granted Orphan Drug designation to ABM-1310, an investigational treatment option for people living with malignant gliomas such as glioblastoma. Now, reports clinical-stage biopharmaceutical…
Continue ReadingABM-1310 Granted Fast Track Designation for Glioblastoma
According to a recent BioSpace article from Heather McKenzie, the U.S. Food and Drug Administration's Cellular, Tissue, and Gene Therapies Advisory Committee recently voted against approving NurOwn, an investigational…
Continue ReadingFDA Advisory Committee Votes Against Approving NurOwn for ALS
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