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.
As much as you and I have tried to keep up on COVID-19 news, the information changes every day. Although about 80% of cases are asymptomatic or mild to…
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…
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…
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,…
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…
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…
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…
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…
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…
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)…
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…
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…
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,…
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…
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…
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…
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…
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…
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,…
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…
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…
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…
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…
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…
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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