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.
According to a drug filing and press release from Pharmaceutical Business Review, the FDA granted a priority review to GlaxoSmithKline for their humanized monoclonal antibody therapy, Nucala (mepolizumab). Currently,…
Continue ReadingNucala Granted Priority Review For Treatment of Hypereosinophilic Syndrome
Elizabeth M. Dugan, Adam M. Huber, Frederick W. Miller, Lisa G. Rider / CC BY-SA (https://creativecommons.org/licenses/by-sa/3.0)
This year, because of COVID-19, many healthcare-related events and symposiums have been moved online. However, that doesn't mean that the insights are any less helpful! In the virtual ACR…
Continue ReadingThe Importance of Cancer Screenings in Patients with Scleroderma, Dermatomyositis
In a time of instability, health crises, and stigma, screenwriter Christian Hadjipateras advocates for a positive change. With nearly 5.69 million diagnosed cases of COVID-19, Christian notes that there…
Continue ReadingStop Stigmatizing Facial Differences, Says Man with Craniosynostosis
In high school, Chuck Graham loved sports. He was a student-athlete dedicated to his teams. But then, at 16 years old, a car accident paralyzed Graham from the chest…
Continue ReadingFormer Senator Chuck Graham, an Advocate for People with Disabilities, Has Passed Away
What do Michael J. Fox, Muhammed Ali, and Ozzy Osbourne all have in common? Well, they all received a diagnosis for Parkinson's disease. Around 60,000 Americans are diagnosed with…
Continue ReadingManipulating Stem Cells into Nerve Cells Could Ease Parkinson’s Symptoms
According to StatNews, biotechnology company 23andme is looking to understand the intersection of genetics and COVID-19. Normally, 23andme uses ancestry kits to inform users of their genealogy. But now, the…
Continue Reading23andMe Looks to Study the Connection Between Genetics and COVID-19
My coworker isn't social distancing. In fact, she's more touchy than ever. She always wants to cuddle or play when I'm in the middle of writing an article. She yells…
COVID-19 changed the way that many of us live, shop, socialize, and work. Currently, the global pandemic sits at 5.54 million cases. But even in places like Uganda, with only…
Continue ReadingPeople with Albinism Risk Skin Cancer During Global Pandemic
During the 10th European Conference on Rare Diseases & Orphan Products, hosted by Eurodis, many people advocated for improved newborn screening panels. In particular, these panels should include more testing…
Continue ReadingMore EU Newborn Screenings Needed for Genetic Disorders
What's better than a good night's sleep? In my opinion, waking up feeling refreshed is one of the nicest feelings. But for patients with Parkinson's disease, it can be difficult…
Continue ReadingPatients with Parkinson’s Disease Sleep Better Following Bright Light Therapy
According to MedScape, tumor necrosis factor (TNF) inhibitors present severe issues for patients with autoimmune disorders. In particular, patients exposed to TNF inhibitors may experience inflammation throughout their central nervous…
Continue ReadingTNF Inhibitors Increase Risk of Central Nervous System Inflammation for Patients with Autoimmune Disorders
According to Multiple Sclerosis News Today, the National Multiple Sclerosis Society recently released new exercise guidelines for people with multiple sclerosis. Exercise is extremely beneficial to health, for those…
Continue ReadingNew Exercise Guidelines for People with Multiple Sclerosis
A seemingly healthy baby was born in China. But as she grew up, her family started noticing that their daughter wasn't hitting motor milestones. She didn't start walking until she…
Continue ReadingCharcot-Marie-Tooth Disease Caused by Novel MCM3AP Gene Mutation
A few months ago, many of us were living completely different lives: going to rare disease conferences, heading to work each day, going out for food, seeing family and friends.…
Continue ReadingHow COVID-19 “Orchestrates a Hostile Takeover” in Cells
The virtually-held National Kidney Foundation 2020 Spring Clinical Meetings explored various topics relating to nephrological conditions, treatment, and patient outcomes. One presentation, spearheaded by Dr. Adam Weinstein, MD, and…
Continue ReadingIs There Too Much Variability in Hyperkalemia Management?
Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…
Continue ReadingRaising Money to Benefit Siblings with Tay-Sachs Disease
Recently, researchers from European Molecular Biology Laboratory (EMBL) looked to understand the cause of pulmonary arterial hypertension (PAH). They collaborated with Stanford University through the Life Sciences Alliance. Because…
Desde el distanciamiento social y los negocios cerrados hasta las preocupaciones personales de salud, COVID-19 ha cambiado la vida diaria en el futuro previsible. Hay casi 4.75 millones de diagnósticos…
Continue ReadingCómo las Enfermedades Raras Biotech “Cure Rare Disease” Está Manejando COVID-19
For the last few months, we've been inundated with stories of COVID-19, and with good reason, considering the global pandemic reached over 5 million cases worldwide as of this…
Being at peace with ourselves and our lives makes daily living so much easier. Of course, sometimes it's easier said than done. But one tactic may help improve comfort, confidence,…
Continue ReadingA New and Beneficial Tactic for People with Multiple Sclerosis? Mindfulness Training
The medical realm is changing - but how does that impact patient care and clinical expectations? The National Hemophilia Foundation discusses how clinical expectations for patients with hemophilia don't necessarily…
Continue ReadingNew Clinical Expectations Needed to Treat Hemophilia
Genetic research is a burgeoning and exciting field. With the discovery of new genetic mutations and variants comes a deeper understanding of rare diseases and their subtypes. According to Cancer…
Continue ReadingA SF3B1 Mutation May Cause A New Subset of Myelodysplastic Syndromes
Every day, medical researchers look to learn more about rare diseases, symptoms, and treatment. Recently, the Muscular Dystrophy Association (MDA) connected with Dr. Priya Sunil Kishnani, MD, MBBS to discuss what…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Sign Up For Our Patient Panel
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.
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.