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.
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…
If you're like me, you've been refreshing the news every day trying to find more information on COVID-19. After all, life changed in March; the global pandemic and its associated…
If you're like me, COVID-19 has become a major part of your life: in research, discussion, or just daily impact. That's no surprise, considering the numbers. At the time of…
According to News Scientist, researchers from Tufts University recently sought to understand whether Alzheimer's disease could result from viral causes. They focused on herpes simplex virus 1 (HSV-1), a common…
According to a press release from PR Newswire and GuruFocus, drug discovery and development company Sutro Biopharma received promising phase 1 clinical data for their drug therapy STRO-002. Their Phase…
The COVID-19 situation is rapidly evolving every day. At the time of this article, there are just under 4 million diagnosed cases worldwide, with 1.3 million in the United States…
Chive Charities is a 501(c)3 non-profit organization committed to providing patient advocacy and support. They have raised money for a young girl with a mutated CAMK2B gene to receive intensive physical therapy at…
When Shellye Horowitz was younger, she had a clear link to the rare disease community: her father. He had hemophilia and, much like many patients, relied on blood clotting factor…
Bronchiectasis News covers a potentially beneficial treatment for patients with bronchiectasis: bubble-positive expiratory pressure, or Bubble-PEP. These devices help clear mucus from the lungs. Although other forms of airway clearance…
According to BioTechniques, American researchers have taken a new, hands-on approach to learning more about cytomegalovirus-induced microcephaly. Although cytomegalovirus has been linked to microcephaly, the topic is somewhat under researched.…
A team of researchers recently clarified how cellular mechanisms work in the treatment of Krabbe disease. Previously, researchers believed that bone marrow transplants assisted in providing positive patient outcomes through…
According to UIC Today, Jessica Lechuga became immersed within the rare disease community when she was still a teenager. That's because, at age 17, Jessica gave birth to her daughter…
According to WMC5, a research study out of Cleveland, OH, has been testing the impact of robotic exoskeletons on movement for patients with multiple sclerosis. For Kathy Miska, this is…
Según un comunicado de prensa en Global Newswire, la compañía biofarmacéutica MediciNova recibió un Aviso de concesión para una solicitud de patente para MN-166, que podría usarse para tratar el…
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