From “Ought” to “Is”: Surfacing Values in Patient and Family Advocacy in Rare Diseases

by Meghan C. Halley Note: The following editorial was recently published in the American Journal of Bioethics, Volume 21, Issue 12 (2021). In this issue, Lynch and colleagues (2021) discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do for non-pandemic diseases. In outlining these lessons, the authors provide a cogent and well-reasoned set of recommendations for advocates and policymakers seeking to advance biomedical research in a particular disease area.…
Source: blog.bioethics.net - Category: Medical Ethics Authors: Tags: Disability Featured Posts Health Policy & Insurance Patient Advocacy rare diseases Source Type: blogs

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AbstractLong-term sequel of acute COVID-19, commonly referred to as long COVID, has affected millions of patients worldwide. Long COVID patients display persistent or relapsing and remitting symptoms that include fatigue, breathlessness, cough, myalgia, arthralgia, sleep disturbance, cognitive impairment and skin rashes. Due to the shared clinical features, laboratory and imaging findings, long COVID could mimic rheumatic disease posing a diagnostic challenge. Our comprehensive literature review will help rheumatologist to be aware of long COVID manifestations and differentiating features from rheumatic diseases to ensure ...
Source: Clinical Rheumatology - Category: Rheumatology Source Type: research
Source: Journal of Neurology - Category: Neurology Source Type: research
ConclusionA growing body of literature has shown an association between SARS ‐CoV‐2 infection and the development of different types of CNS demyelination. Although causality cannot readily be inferred, this review may suggest a probable causal relationship, through a para-infectious or post-infectious immune-mediated etiology in COVID-19 patients. This relationship needs to be clarified in future research.
Source: Journal of Neurology - Category: Neurology Source Type: research
ConclusionsImprovement was seen in most patients. One year after the start of treatment, more than half of the patients were untreated and around one-third in remission. Residual symptoms and deficits were common regardless of treatment.
Source: Journal of Neurology - Category: Neurology Source Type: research
Extra vaccine doses were expected to lower infection rates. But the shots also seem to be preventing severe illness caused by the new variant, the C.D.C. reported.
Source: NYT Health - Category: Consumer Health News Authors: Tags: your-feed-science Vaccination and Immunization Coronavirus (2019-nCoV) Coronavirus Omicron Variant Coronavirus Delta Variant Disease Rates Centers for Disease Control and Prevention United States Source Type: news
by Meghan C. Halley Note: The following editorial was recently published in the American Journal of Bioethics, Volume 21, Issue 12 (2021). In this issue, Lynch and colleagues (2021) discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do for non-pandemic diseases. In outlining these lessons, the authors provide a cogent and well-reasoned set of recommendations for advocates and policymakers seeking to advance biomedical research in a particular disease area.…
Source: blog.bioethics.net - Category: Medical Ethics Authors: Tags: Disability Featured Posts Health Policy & Insurance Patient Advocacy rare diseases Source Type: blogs
Prader-Willi syndrome (PWS) is a neurodevelopmental disorder with hypothalamic dysfunction leading to obesity and behavioral disabilities, including eating disorders (EDs). We evaluated the effects of the COVI...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Tags: Research Source Type: research
Rare diseases frequently attack and weaken the immune system, increasing the patient ’s vulnerability to develop severe conditions after viral infections, such as COVID-19. Many patients with rare diseases also suffer from mental retardation and disability. These rare disease phenotypes do not emerge in older people who are susceptible to COVID-19 infection, but present at a very young age or at birth. These factors must be taken in consideration when caring for this vulnerable patient population during a pandemic, such as COVID-19. Patients with a rare disease have to take their regular medication continuously to co...
Source: The Journal of Infection in Developing Countries - Category: Infectious Diseases Source Type: research
The COVID-19 pandemic has brought about health and social care disruptions for millions of people with complex health needs and disabilities, who are amongst the most vulnerable populations. More than ever before, the need for integrated care is pressing, as fragmented health and care systems struggle to face the pandemic and vulnerable individuals are exposed to aggravated health, social and economic hurdles. The implementation of effective integrated care pathways is long due and must build upon the key guidelines being published by experts worldwide. Furthermore, the pandemic is opening the doors for more remote healthc...
Source: International Journal of Integrated Care - Category: Nursing Source Type: research
By GRACE CORDOVANO PhD, BCPA To be honest, the United States blew it on the mask front. From a public health, caregiver and patient safety, as well as community transmission standpoint, we are at least 3 months late to game. Anytime a brand new virus that humanity does not have any immunity to makes an appearance, is highly contagious, starts rapidly infecting people as well as the doctors and nurses caring for them, hospitalizing, and killing them in concerning numbers across the globe, we should enable every proactive safety measure at our disposal. The first confirmed case of COVID-19 in the US was on January 20,...
Source: The Health Care Blog - Category: Consumer Health News Authors: Tags: COVID-19 Health Policy coronavirus Grace Cordovano masks Pandemic Source Type: blogs
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