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.
In January, Harrison Moseby began having shoulder pain that was interfering with his day-to-day life. As a father and a firefighter, Harrison knew that he needed to be functioning as…
In his life, Paul Green accomplished a lot. He coached the North Queensland Cowboys, who won the National Rugby League title in 2015. Paul played for five different National Rugby…
According to a late September 2022 news release from biopharmaceutical company AEON Biopharma, Inc., positive topline data is available from a clinical trial evaluating ABP-450 for patients with cervical…
Did you know that bone mass accrual and bone mineral density depend highly on puberty? Because of this, puberty delays or interruptions can negatively affect bone mineral density or cause…
In an October 13, 2022 news release from biotechnology company INOVIO, the company shared that positive interim data was available from a Phase 1/2 study. Within the study, researchers…
It’s no secret that excess alcohol consumption can result in numerous adverse health effects. According to an article in the Pharmacy Times, researchers sought to understand how excess alcohol…
Currently, treatment options for Williams syndrome are considered symptomatic; they treat symptoms of the condition, but not the underlying cause. There are no treatments or cures addressing the underlying genetic…
According to an article in GastroEndo News, first published in Clinical Oncology News, the U.S. Food and Drug Administration (FDA) recently approved a combination of durvalumab and gemcitabine plus…
What is the best therapeutic option for individuals with atrial fibrillation (AF or AFib) and chronic kidney disease (CKD)? Currently, doctors typically recommend direct oral anticoagulants (DOACs) to patients with…
Enzyme replacement therapy (ERT) is an approved treatment strategy for those with Pompe disease. It involves providing patients with alpha-glucosidase, which helps to break down glycogen. In addition to reducing…
In 2019, Takeda Pharmaceutical Company experienced some manufacturing and production issues related to its product Natpara, a treatment option for individuals with hypoparathyroidism. The product was recalled in the…
In late September 2022, Healio reported that the U.S. Food and Drug Administration (FDA) approved bevacizumab-adcd (Vegzelma), a biosimilar of Genentech’s bevacizumab (Avastin). The approval of biosimilars such as…
Each year, an estimated 2.9 million cases of cholera are reported across the globe. Caused by Vibrio cholerae (V. cholerae) bacteria, cholera can cause shock, dehydration, and even death.…
Oral corticosteroid drugs can help treat Bell’s palsy, a condition which causes temporary facial weakness or paralysis, if the muscles remain paralyzed over time. According to News Medical, researchers…
According to an article from Marisa Wexler in Muscular Dystrophy News, promising study data is available from the Phase 1 ARCH study. Within the study, researchers evaluated EDG-5506, an…
Before you read on, make sure you have read Part 1 of our interview. In Part 1, Bridget discusses what STXBP1 disorders are and the diagnostic journey her family went…
When Elena Sheppard, 35, was first told that she was pregnant with twins, she was thrilled. Her pregnancy went by fairly smoothly for the most part. However, she woke up…
Neisseria bacteria colonize on the mucosal surfaces of many animals, including humans. In the past, researchers believed that this bacteria could only cause meningitis and gonorrhea in humans. However, shares…
“Together, we can do hard things.” That’s the mission of Clara Inspired, a nonprofit organization that aims to raise awareness and funds to cure genetic disorders like STXBP1 disorders. It’s…
In an investor news release from biopharmaceutical company Avidity Biosciences, Inc., the company shared that the FDA placed a partial clinical hold on new enrollment for the Phase 1/2…
Previously, the American Kidney Fund launched the Unknown Causes of Kidney Disease (UCKD) Project. Through the project, the AKF is working to better understand how undiagnosed or misdiagnosed causes…
Before you read on, don't forget to take a look at Part 1 of our interview. In Part 1, Savanah discussed what metastatic breast cancer (MBC) is, her diagnostic journey, and treatment…
If you’re into electronic music, you need to check out DJ Funk Puppy. This ten-year-old (who goes by Richard Tyler Greene III in his day-to-day life) is a talented DJ,…
When Branden was just a young child, he was diagnosed with a rare genetic disorder called chronic granulomatous disease (CGD). Now, at 33 years old, Branden is passionate about raising…
October is Breast Cancer Awareness Month. This month is dedicated to raising awareness about the impact of breast cancer, raising funds for research, supporting those with breast cancer, and advocating…
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