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.
In the ongoing search for prevention and a cure for Alzheimer’s Disease (AD), a study was conducted at Colorado’s Anschutz Medical Campus. The researchers found that memory and learning are…
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A Gene Has Been Discovered That Could Prevent Alzheimer’s Disease
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According to the National Institute of Neurological Disorders and Stroke, chorea is defined as involuntary movements that are caused by a neurological disorder. It is one of a group of…
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Results of a Three-Year Study Support AUSTEDO to Treat Chorea Related to Huntington’s Disease
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A team headed by Harvard Medical School scientists has taken steps to unravel a dementia that surfaces early in a person’s life. The study, published in Neuroscience News and Nature…
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Frontotemporal Dementia: The Latest Discoveries
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Atlanta, Georgia’s Linseigh Green received a diagnosis of necrotizing enterocolitis (NEC) when she was born. She was sent to the hospital’s NICU only two weeks after her birth. Linseigh’s…
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Necrotizing Enterocolitis: Defying a Dangerous Prognosis
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The XV International Conference on Rare Diseases-D'Genes was streamed in sixteen countries in April 2022. Juan Carrión, D’Genes President, announced that the theme for 2022 is Equity and Rights…
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A Rare Disease Should Not Mean More Isolation and Less Support
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Researchers have known about EGCG for decades. It is a plant compound called catechin found in green tea that may prevent disease and protect cells from damage. According to…
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This Molecule Can Get Rid of Amyloid Tangles Linked to Alzheimer’s Disease
Reports by experts find approximately five to ten percent of cancers may be traced to hereditary genetic changes (germline mutations) which exist in each and every cell. Instead, research in…
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Gene Alterations in Rare Cancers Could Allow for Earlier Diagnosis of Hereditary Cancers
Lyme disease is often either misdiagnosed or completely undiagnosed. According to Inside Precision Medicine's report, researchers at Mount Sinai’s Icahn School recently teamed with Johns Hopkins University to improve diagnostics…
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Researchers Identify Genes Linked to Long-Term Lyme Disease
According to a recent article in Medical Life Sciences, the radiation dose rates used by the new FLASH radiotherapy are over three hundred times more intense than conventional treatments. The…
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New FLASH Radiotherapy Has Potential to Kill Tumors Faster and With Fewer Side Effects
Scientists at California’s La Jolla Institute are conducting a study that is the forerunner of a clinical that will be investigating human antibodies. The new vaccine will be pitted against…
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An All-out Attack on the Lassa Virus That Kills 300,000 West Africans Each Year
Verge Genomics, based in San Francisco is one of a series of biotechs that have entered into a new era using AI in drug discovery. The company is backed by…
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Will This Novel Drug That Utilizes AI Succeed in Having an Impact on ALS When so Many Others Have Failed?
AVM arteriovenous malformation
In 2006 twenty-nine-year-old Austinite Ben Munoz of Dallas, Texas experienced such a severe headache and dizziness that he drove to the hospital and underwent surgery several hours later. Ben was…
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Developing A Worldwide Community for People With Rare Diseases
Join thousands of people worldwide in raising awareness of mouth cancer during the month of November. It is the largest campaign in the UK in support of education and awareness…
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November is Mouth Cancer Action Month
Fostamatinib is a spleen tyrosine kinase (SYK) inhibitor recommended to treat ITP patients who have been unable to receive a sufficient response from other medications. TAVLESSE® (fostamatinib), developed by Grifols…
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Treatment for Adult Patients with Chronic Immune Thrombocytopenia (ITP) is Now Available in the UK
Dr. Paul Monga, director of Pittsburgh’s Liver Research Center, and his team are studying cancer and liver regeneration. Dr. Monga recently published a study that finds activation of a medication…
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A New Drug With the Potential to Lessen the Demand for Liver Transplants
Due to varied periods of decline among patients, previous research indicates that it is difficult to develop treatment options for patients who have relapsed DLBCL. This holds true especially when…
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Study: Diffuse Large B-Cell Lymphoma Patients May Benefit from Involvement in Decision Making
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Patrick Freyne recently interviewed three people with myalgic encephalomyelitis (ME) for his column in the Irish Times. Patrick describes the circumstances behind the first known cases of the ME…
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Myalgic Encephalomyelitis is Often Misdiagnosed
Three of Edith Lemay and Sebastien Pelletier’s four children were diagnosed with retinitis pigmentosa, an untreatable genetic condition. The parents were told their children would eventually be blind. In trying…
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Traveling the World Before Retinitis Pigmentosa Takes Their Sight
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Master Chef Christine Ha of Dublin is coping with the fact that an accurate diagnosis years earlier would have prevented her blindness. Christine now spends a great deal of time…
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Award Winning Blind Master Chef Alerts People to the Value of Eye Exams to Prevent Vision Loss
Several years ago, Laura Evans of Clydebank, Scotland received devastating news from her doctor that she only had two years to live. Laura had been diagnosed with a type of…
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Mesothelioma Patient Appears Free of Cancer After Deadly Prognosis
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Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
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Compassion Corner: Study Examines Ways to Approach Patients When Doctors Deliver ‘Bad News’
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Although paroxysmal supraventricular tachycardia (PSVT) may not be a common household name, it is experienced by five hundred Americans with over fifty thousand patients visiting hospitals for treatment in…
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An Experimental Nasal Spray Could Treat a Paroxysmal Supraventricular Tachycardia
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A team of researchers at Israel’s Weizmann Science Institute and California University in San Diego linked fungi to approximately 35 cancers. They created a pan-cancer mycobiome atlas exposing new…
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Scientists Have Created an Atlas Connecting Fungi to Thirty-Five Cancers
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A code for an autism-linked syndrome has now been established and entered into the U.S. diagnostic manual that catalogs health conditions. According to a recent report in Market Watch,…
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PTEN Hamartoma Tumor Syndrome Has Been Assigned Its Own Diagnostic Code
Aduhelm was recently approved by the FDA for the treatment of Alzheimer’s disease (AD). The FDA approval, the first in the history of the disease, was based on the drug’s…
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The Newest Alzheimer’s Treatment Alleviates Some Side Effects but Exacerbates Others