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.
La investigación genética es un campo floreciente y emocionante. Con el descubrimiento de nuevas mutaciones y variantes genéticas se llega a una comprensión más profunda de las enfermedades raras y…
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Una Mutación SF3B1 Puede Causar un Nuevo Subconjunto de Síndromes Mielodisplásicos
June marks the start of Aphasia Awareness Month, designed to educate many on aphasia: causes, long-term affects, and the lives of those living with this condition. But, as the University…
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June is Aphasia Awareness Month! So: What is Aphasia?
According to News Medical, a recent international study designed to understand Lesch-Nyhan syndrome and its potential treatments discovered something intriguing: biochemical changes in the skin, cerebrospinal fluid, and urine. Now,…
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Patients with Lesch-Nyhan Syndrome Have Biochemically Altered Skin, Urine, and Spinal Fluid
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According to Disability Horizons, an extremely talented filmmaker with muscular dystrophy recently won an Award of Recognition from The Best Shorts Film Competition. Stephanie Castelete-Tyrrell's film, entitled Muscle Warriors, documents…
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Filmmaker with Muscular Dystrophy Wins Award for “Muscle Warriors” Documentary
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Stacey Saiontz is many things: a worker, a wife, a mother. But right now, she is concerned. As an allergy parent, or a parent whose child has severe food…
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Consumers with Allergies, EoE Worry When FDA Relaxes Food Labeling Guidelines
In a press release on PRWeb, the Southwest Eye Institute explains how Dr. Ahmed Soliman recently performed a Bowman layer transplant to treat keratoconus. This unique and minimally-invasive procedure, which…
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Southwest Eye Institute is the 2nd in the U.S. to Offer Bowman Layer Transplant for Keratoconus
It has been nearly 3 months for Vonny LeClerc, a 32-year-old journalist from Glasgow, Scotland. Nearly 3 months of extreme fatigue, joint pain, body aches, chest pain, intermittent fevers and…
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The “Long Haulers:” When COVID-19 Symptoms Last for Months
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Exercising has many physical and emotional benefits. It can manage blood sugar levels, improve your mood, assist with weight loss, or even strengthen your memory. Endurance training, specifically, benefits tissue…
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Can Endurance Training Prevent Friedreich’s Ataxia Onset? One Study Suggests Yes
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Patient registries are a great way for patients to get involved in shaping future research around their conditions. Many times, getting involved in a rare disease (or rare disorder)…
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Take Part in the Pompe Disease Registry
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Though many researchers explored topics of genetics and genomics over the years, the two fields are now emerging as key players within the realm of health and medicine. One…
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LRRK2-Lowering Gene Mutations Prove Safety of Inhibitors
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Being a healthcare worker can be difficult: long hours, lots of moving parts, exposure to many patients and illnesses, and tons of policies and procedures to follow. But being a healthcare worker…
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Practice Self-Care During COVID-19: A Guide for Healthcare Workers
Unfortunately, many people with sickle cell disease are at an increased risk of experiencing central nervous system complications that can reduce quality of life. But more importantly, complications like stroke,…
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New Clinical Guidelines For Treating Sickle Cell Disease
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When I was younger, I was diagnosed with Kawasaki disease, an inflammatory disease that impacts the coronary arteries. As I've grown up, I've become increasingly interested in how that…
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A Doctor’s Opinion on Diet and Gastroparesis
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In the past, genetics were hypothesized to be a potential cause of glaucoma and eye disease. Now, British researchers definitively linked SPATA13 gene mutations with a form of glaucoma called primary…
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A New Genetic Mutation Is Linked to Primary Angle-Closure Glaucoma (PACG)
Because of COVID-19, many health and medical-related conferences and events have been moved to virtual settings. But that doesn't mean that the learning has stopped, says Healio. During the Heart…
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A New “Calculator” Analyzes 5-Year Risk for Arrhythmic Events in Long QT Syndrome
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According to BioSpace, biotechnology company Argenx recently announced positive results from their Phase III ADAPT clinical trial. The company, who seeks to find breakthroughs in immunology and translate them…
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Positive Phase III Trial Results Show Efgartigimod as Effective for Myasthenia Gravis
From 1985 to 1990, Michael J. Fox entertained the world with his portrayals of Marty McFly in the Back to the Future series. Although Marty is figuring out time travel as he…
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Michael J. Fox Foundation (MJFF) Offers Educational Parkinson’s Disease Webinar Series
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Finding out that you are pregnant conjures up a lot of feelings: nervousness, excitement, happiness, and love. But if you have a rare disease or disorder, especially a genetic condition,…
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Charcot-Marie-Tooth Does Not Increase Risk of Reproductive Complications
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On May 28th, biopharmaceutical company Bird Rock Bio filed an IND application to perform a Phase II clinical study to determine the efficacy and tolerability of nimacimab. The company hopes…
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IND Application Filed for Nimacimab, A Potential Treatment for Renal Diseases
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Orlando-based healthcare company AdventHealth developed a novel immunotherapy treatment designed to treat patients with AML and MDS whose conditions failed to respond to other treatments. In addition, the organization is…
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Novel Immunotherapy Treatment for AML and MDS Developed by AdventHealth
Medical cannabis has been touted as an effective treatment for a variety of conditions: glaucoma, epilepsy, multiple sclerosis, and even cancer. But is this controversial product also a potentially treatment…
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Could Medical Cannabis Treat Parkinson’s? The Answer is Unclear
According to MIT News, scientists recently discovered that inhibiting levels of the GSK3 alpha enzyme could reduce, or even reverse, symptoms of fragile X syndrome. Their study, which utilized mouse…
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MIT Scientists Created a Novel Treatment for Fragile X Syndrome
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Over the last few months, most of the news you've read has been about COVID-19. Though the first cases appeared in November or December of 2019, the novel coronavirus…
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Are Most Cases of COVID-19 Asymptomatic?
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Recently, NPR's All Things Considered discussed a troubling story on the show: rapidly increases diagnoses, and fatalities, of healthcare workers stemming from COVID-19. The novel coronavirus was declared a pandemic in…
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CDC Notes Increased COVID-19 Cases, Fatalities for Healthcare Workers
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If you think about it, our brains are pretty amazing. It is one of our most complex features and contains tens of billions of neurons which help control the…
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An Experimental Tau Inhibitor Could Treat bvFTD, A Rare Form of Dementia