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.
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…
A few years ago, Kyan Harris started experiencing some unwelcome health issues. At just nine years old, the boy wanted to play rugby with his friends. But instead, he was…
COVID-19 diagnoses are growing at a rapid rate, to the point where data is changing daily. As of today, there are 4.23 million diagnosed cases worldwide, with 1.39 million in…
A 6-year-old girl presented with facial abnormalities, developmental delays, and issues with her renal system. Her family took her to their family physician. Then, when that uncovered no cause,…
As the world grows more technologically advanced, so does the medical field. Doctor-patient communication can happen over the phone or email. Telemedicine abounds. More technology is being pointed towards remote…
According to Juvenile Arthritis News, treating juvenile idiopathic arthritis early helps reduce symptoms, nearly "inactivating" the condition. The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) JIA Registry found that early…
It's official: May is Cystic Fibrosis Awareness Month! So myself, and the Patient Worthy team, are excited to bring you some stories to help build your awareness and increase patient…
It all began with an email in 2019. Matt Might, director of the Hugh Kaul Precision Medicine Institute, shot his thoughts over to neurosurgery resident Matt Davis, whose 3-year-old son…
According to Batten Disease News, Invitae and Axovant Gene Therapies partnered up to offer free genetic testing in North America. This will focus on children who are thought to…
Are opioids an effective and frequently-prescribed treatment for hemophilia? Actually, according to Hemophilia News Today, opioids are prescribed at a much higher rate than reported. This suggests that doctors and…
Patients who better understand their condition and the necessity of treatment are more likely to experience positive outcomes, says Hemophilia News Today. This is because increased awareness and education correlates…
A recent University of Sheffield news release explores findings which highlight a potential cause of leukodystrophies: immune cells. This group of rare childhood neurological disorders impacts the myelin sheath, the…
Technological advancement throughout the world will ultimately lead to new ideas and strategies within the medical realm. As reported by Azo Sensors, a team of Brazilian researchers is already…
With 4.15 million cases across the globe, COVID-19 is at the forefront of discussion. Knowledge about the viral pandemic continues to grow each and every day. Yet there are still…
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