Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.
Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…
Although many people in the United States face challenges when seeking healthcare services, new research has found that when seeking a diagnosis for a rare disease, the situation is…
The Catawba Virginia Farmers Market’s mission is to provide the Catawba community with local produce and handicrafts. Stephanie and Donald Schneider owners of Pacaberry Farms have been vendors at the…
Dr. Cecilia Chung and associates at the Vanderbilt University’s Medical Center conducted a study published recently in MedPage Today. Results showed that patients who had inflammatory disorders, as well…
Scientists have known for years that Wiskott-Aldrich syndrome (WAS) is caused by a gene on the X chromosome. The gene (the WASP gene) can be found throughout the immune…
Takeda and its collaborator, Arrowhead Pharmaceuticals, recently announced results from AROAAT-2002 of the investigational drug fazirsiran. The drug is an RNA interference therapeutic developed to lessen alpha-1 antitirypsin protein…
Danielle Morley of Radcliffe, UK, has been an advocate for plasma donation ever since being diagnosed with a rare blood disorder called immune thrombocytopenic purpura (ITP) during her first…
As time runs out, volunteer Dominic Gillen is running even harder. In an interview with KETV, he admits that they are not yet where they should be in order…
CBC News Canada carried the story of a 23-year-old patient, Morgan Buyaki of Saskatchewan, Canada, who was diagnosed eighteen months ago with eosinophilic granulomatosis with polyangiitis (EGPA). Morgan’s mother…
The most common form of leukemia in Western countries is chronic lymphocytic leukemia (CLL). The disease accounts for almost thirty percent of known leukemia cases. Approximately 30,000 Europeans were…
A recent article at Healio Rheumatology highlights a presentation given by Dr. Arthur Kavanaugh of the University of California to attendees at the 2022 Clinical Rheumatology Congress East. Dr. Kavanaugh…
Tuberous sclerosis complex (TSC) is classified as a rare genetic disorder that causes typically benign tumors in the brain, skin, heart, kidneys, or lungs. As described in a recent article…
According to a press release by Merck & Co. issued on June 24, the European Commission has approved the use of adjuvant Pembrolizumab to treat resected stage IIB/C melanoma. "Adjuvant"…
A study of hereditary angioedema (HAE) patients in Brazil was featured in an article in the Angioedema News. Researchers found that patients waited on average seventeen years for a…
The history of mesothelioma dates back to 1767 as being the earliest record of tumors found on the lining of the lungs. In 1909 J.G. Adami introduced the term…
Findings from the MITO23 Trial investigating the outcome of the chemotherapy drug trabectedin against physician’s choice to treat BRCA-mutated patients with ovarian cancer were presented at ASCO’s 2022 Annual…
The patient, age 82, had recovered from a stroke several months ago. According to a recent article reported on dnyuz.com and originally published in the New York Times, the…
The most common gastrointestinal tumors in the world are esophageal cancers. A recent article in DovePress reports that the malignancy is also the eighth most common worldwide. In China…
The study was intended to recruit 6,000 Alzheimer's patients, but even after recruiting had proceeded for seven months, just 29 patients were enrolled. As a result, the trial was cancelled,…
The novel program called BeginNGS™ was described in a recent article which has a goal of testing for five hundred disorders and several thousand infants. Rady Children's Institute for…
Genetic testing has always been costly and directed at DNA sequencing. Only a limited number of genes could be tested. It was useful to a small number of patients…
IBD (inflammatory bowel disease) is an umbrella term for ulcerative colitis and Crohn’s disease involving chronic inflammation in the digestive tract. Common symptoms are fatigue, pain, and reduction in appetite.…
Liver cirrhosis (scarring) can be fatal because damage to the liver is irreversible. A cirrhotic liver leads to liver failure, liver cancer, and eventually death. According to a report in…
According to an article recently published in Targeted Oncology, the FDA approved olaparib (Lynparza), a product of AstraZeneca Pharmaceuticals, in March of this year. Lynparaza will be used as adjuvant…
The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility…
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