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.
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…
Every day, we learn more and more about COVID-19. This viral pandemic has nearly 4.9 million diagnosed cases worldwide, with 1.5 million in the United States alone. As more about…
From social distancing and shuttered businesses to personal health concerns, COVID-19 has changed daily life for the foreseeable future. There are nearly 4.75 million diagnoses worldwide, with 1.53 million in…
Multiple biotechnology and pharmaceutical companies have joined in the fight against COVID-19. But one, Gilead Sciences, has been at the forefront of both progress and controversy. The company developed remdesivir,…
In her early 20's, Mackenzie Alleman lost her mother to breast cancer. Then, at 28, she herself underwent a preventative double mastectomy after learning that she carried the mutated BRCA1 gene.…
In January 2020, doctors flocked to the ACR Winter Symposium to discuss new trends, treatments, and burgeoning research within the field of rheumatology. Dr. Jeffrey Curtis, MD, MS, MPH presented…
Recently, scientists from Emory University set out to discover whether there was any pathological link between spinocerebellar ataxia type 36 (SCA36) and amyotrophic lateral sclerosis and frontotemporal dementia (ALS/FTD). Both…
The UFC has some tough fighters in it. But 35-year-old Joe Ellenberger never thought that his most difficult opponent would be within himself. That is, his paroxysmal nocturnal hemoglobinuria (PNH),…
A gene therapy for the treatment of GM1 gangliosidosis was granted Orphan Drug Designation in April. PBGM01 seeks to treat the most severe form of this condition - infantile. Read…
A recent BioSpace press release shares some exciting news for patients with non-small cell lung cancer, medullary thyroid cancer, and other thyroid cancers caused by RET gene mutations. Retevmo (selpercatinib) is the…
Ali Hardy struggled with her health for a long time. In an article for The Mighty, Ali, an actress in New York City, explains that she was never able to…
In 2003, Suzan Jackson was diagnosed with myalgic encephalitis, or chronic fatigue syndrome (ME/CFS). Shortly after, she was faced with the complexity of having a chronic illness. Should she tell…
¿Son los opioides un tratamiento eficaz y frecuentemente recetado para la hemofilia? En realidad, según Hemophilia News Today, los opioides se recetan a un ritmo mucho más alto de lo…
A recent study published in Acta Neuropathologica discusses the importance of symptom and health management for people with progressive supranuclear palsy. The rare condition, which causes neuronal degeneration, has no cure. But…
A study in the American Journal of Hematology recently presented some troubling findings on the relationship between Fanconi anemia and allogeneic hematopoietic stem cell transplantation (alloHSCT). Patients who participated in alloHSCT before achieving…
For those in the rare disease community, you know that it can take a long time to reach a diagnosis for your condition: an average of 4.8 years! But upon diagnosis, many…
A recent news release on BioSpace shares how GTX-102, an investigational antisense oligonucleotide drug therapy for Angelman syndrome, was granted Fast Track designation from the FDA. The therapy, created by GeneTx…
Imagine that you're a parent of five beautiful daughters. One night, you put them all to bed and all seemed well: playful, happy, excitable. Then, the next morning, you wake…
Blood clots and fever and coughing: oh my! As COVID-19 spreads throughout the globe, researchers are discovering more and more symptoms associated with this novel coronavirus. But what happens after recovery? Well,…
In 2003, a respiratory illness called Severe Acute Respiratory Syndrome (SARS) swept the globe. The condition, caused by a coronavirus, spread throughout two dozen countries, infecting 8,098 people and killing…
Many patients with rare diseases require some sort of treatment or therapy to manage their conditions. In the case of atypical hemolytic-uremic syndrome, or aHUS, this therapy is dialysis. Learn…
According to Hemophilia News Today, data collected from a Phase 2b trial highlights that the subcutaneously administered DalcA is effective for the treatment of hemophilia B. Find the full press…
When studying biomarkers of lupus nephritis, researchers at the University of Houston discovered something interesting: race-based differences. Biomarkers are some sort of measurable substance; in this case, urinary proteins. However,…
According to ANCA Vasculitis News, recent research shows that patients with multiple sclerosis who are being treated with Lemtrada are at greater risk of developing severe ANCA vasculitis. The drug therapy…
COVID-19 was declared a pandemic in March, marking a distinct change in daily life. With nearly 4.5 million diagnosed cases worldwide, it is no wonder people are concerned about the…
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