Even as COVID-19 cases die down, post-COVID syndrome still plagues many individuals across the world. These individuals have faced ongoing COVID-19 symptoms for more than two weeks following diagnosis. The…
Soligenix Inc. has just announced that they've received a Pediatric Investigation Plan waiver, or PIP waiver from the MHRA, the UK's marketing agency. Now, Soligenix Inc has a pediatric waiver…
According to a recent article from the Irish Medical Times, a combination of surgery and platinum-based chemotherapy is the best treatment for patients with advanced ovarian cancer. Ovarian Cancer Ovarian…
According to a news release from the EveryLife Foundation for Rare Diseases, North Carolina became the 4th state in the nation to sign newborn screening legislation in 2021 (following Arizona,…
On November 18, 2021, the Rare Disease Legislative Advocates (RDLA) held their monthly webinar. These webinars provide the rare disease community with updates regarding relevant legislation. As the year begins…
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"…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Patient Worthy had the privilege to attend in-person the Periodic Paralysis Conference, which took place from October 30-31, 2021 and was organized by the Periodic Paralysis Association (PPA). This event…
Colorado is a beautiful state for fly fishing, and it attracts many people who love the sport. A group of anglers from this state has joined together, united by both…
Kaelyn Franco was an experienced athlete by the time she entered college, and a friend recommended taking a spin class. According to an article in Yahoo, 23-year-old Kaelyn took her…
GlaxoSmithKline has recently announced their new approval of Nucala by the European Commission. This therapy has been approved for three new diseases, all of which are driven by eosinophils. Nucala is…
CRISPR Cas9 gene editing is still looked upon as a new phenomenon in medicine. Yet it appears in the news almost every week. This week Neurology Today shines a light…
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November was alpha-1 antitrypsin deficiency (A1AD) awareness month, and A1AD is certainly a rare disease which deserves more awareness. Even with universal healthcare in Canada, many patients who have alpha-1 antitrypsin deficiency…
The FDA will review parsaclisib as a treatment for Non-Hodgkin lymphoma (NHL) after accepting Incyte's New Drug Application (NDA). Specifically, the NDA was submitted for the treatment of relapsed or…
According to Healio, the FDA recently granted Orphan Drug designation to nanatinostat and valganciclovir ("Nana-val") for the treatment of patients with Epstein Barr virus+ diffuse large B-cell lymphoma (DLBCL). In…
In April 2020, Elly Hawkins, a mother of three who currently lives in Queensland, Australia, began experiencing some odd symptoms. At first, the 35-year-old woke up with extreme vertigo. It…
A recent clinical trial called CREDENCE has uncovered that canagliflozin, a sodium-glucose cotransporter 2 (SGLT2), can reduce hyperkalemia risk in chronic kidney disease (CKD) and type 2 diabetes patients who…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Happy Friday! This week, we'd like to get to know more about you! Fill out the 2021 Patient Worthy Reader's Survey and let us know the reasons you come to…
According to a recent article, a recent study from the U.K. showed that emergency methods of managing hyperkalemia, such as the use of insulin/dextrose, are not the most effective treatments.…
In the first part of the "Save Our Medicine" series, you met moms Tiffany, DeAnna, and Sara, who are working to make a change and save experimental medication access for…
According to a recent study by the investigative staff at Tufts University in Boston, Massachusetts, there is a direct correlation between the ethnicity or race of the site personnel and…
A recent study has found that the combination of temozolomide (T), vincristine (V), and irinotecan (I), may be the best standard of care for all patients (children and adults) diagnosed…
In a recent article from Porphyria News, Claire Richmond describes how she lives with acute hepatic porphyria (AHP), a rare disease that requires long-term management. Acute Hepatic Porphyria (AHP)…
Cutaneous T-cell lymphoma (CTCL) is a rare type of cancer with its origin (pathogenesis) found in white blood cells (T lymphocytes). The disease is incurable and debilitating. A recent article…
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