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.
When Isabel Blevins was just 16 years old, she caught the flu. While she recovered well at the time, her health seemingly went downhill after this incident. Suddenly, Isabel was…
Each year, there are an estimated 220,000 new cases of cryptococcal meningitis. Unfortunately, researchers hypothesize that this results in over 100,000 to 180,000 deaths; many of these are in those…
There are multiple factors which may play a role in the development of cerebral palsy, a neurological movement disorder. This condition can be caused by injuries to the brain at…
In 2018, Ethan Lambert was born. His parents, Kassondra and William, were thrilled with the new addition to their family. For the first year, Ethan seemed to be developing fairly…
In the past, certain research has suggested a relationship between the use of therapies like TNF inhibitors, tocilizumab, and tofacitinib, and a heightened risk of Alzheimer’s disease (AD) or dementia.…
The main symptom of Kleine-Levin syndrome – excessive sleepiness (hypersomnolence) – is also a key characteristic of many other sleep disorders, such as narcolepsy. Additionally, there are currently no observed…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare diseases or conditions. For the purpose of this status, “rare”…
Many patients with sickle cell disease (SCD) experience “pain crises,” or periodic episodes of extreme pain. These pain crises occur when sickle-shaped red blood cells block the flow of blood…
In patients with hereditary angioedema (HAE), the C1-inhibitor blood protein does not function properly, allowing bradykinin peptides to build up in the body. These then cause inflammation and fluid leakage;…
Have you ever heard of acral lentiginous melanoma? This rare form of skin cancer typically develops on nail beds, on the palms of the hands, or soles of the feet.…
Six years ago, researchers began developing single-domain antibodies (nanobodies) to help identify different species of Ebola; their work can be found published in ACS Infectious Diseases. Initially, the nanobodies were created to…
In 2020, Tyrese Dibba wanted to make a change for those who were Deaf and hard-of-hearing. Tyrese himself is Deaf and also has partial vision loss, resulting from his CHARGE…
In the past, there have been a few case reports and other studies which theorized a potential link between eosinophilic conditions, such as eosinophilic esophagitis (EoE), and Celiac disease, a…
Two years ago, China approved ensartinib as a second-line therapy for those with ALK+ non-small cell lung cancer (NSCLC). There have been advances over time. Now, according to a late…
In the Phase 3 KEYNOTE-522 clinical trial, researchers found that pembrolizumab was effective in treating patients with triple-negative breast cancer (TNBC). According to Medical XPress, researchers wanted to determine whether…
Did you know that an estimated 50% of those with lupus have neuropsychiatric symptoms, or symptoms which impact their mental and psychological health and functioning? For example, some people with…
On April 6, 2022, biotechnology company Dialectic Therapeutics announced via press release that its therapeutic candidate DT2216, designed for relapsed or refractory (R/R) cutaneous T-cell lymphoma (CTCL) or peripheral T-cell…
In the United States, Orphan Drug designation is granted by the FDA to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. “Rare” is defined as…
April 15, 2022 marks the 9th annual International Pompe Day, designed to help raise awareness and education around Pompe disease. The slogan of International Pompe Day is "Together We…
In a Phase 3 clinical trial, researchers evaluated I/ONTAK (also known as E7777) as a potential therapeutic option for persistent or recurrent cutaneous T-cell lymphoma (CTCL). According to Targeted Oncology,…
When news of a bacterial meningitis outbreak spreads, you may hear the phrase "cluster." When referencing a small cluster, it refers to a smaller group of people, often in a…
At the end of March 2022, ALS News Today announced that IFB-088, an experimental treatment for amyotrophic lateral sclerosis (ALS), earned Orphan Drug designation from the FDA. The treatment was…
Make sure to check out Part 1 of our interview with Dan Pezzetta, an advocate for the rare disease and chronic illness communities. In Part 1, we dug into Dan's…
In a late March 2022 news release from biopharmaceutical company CANbridge Pharmaceuticals, Inc. ("CANbridge"), the company noted that the first patient was dosed in a Phase 1b/2 clinical trial evaluating…
In 2020, the CDC estimates that there were 241 million cases of malaria globally, of which 627,000 people died. Unfortunately, many of the mortalities were associated with children in sub-Saharan…
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