Commentators and Journalists Weigh In On Digital Health And Related Privacy, Safety And Security Matters. Lots Of Interesting Perspectives - August 27, 2019.

-----This weekly blog is to explore the larger issues around Digital Health, data security, data privacy and related matters.I will also try to highlight ADHA Propaganda when I come upon it.Just so we keep count, the latest Notes from the ADHA Board are dated 6 December, 2018! Secrecy unconstrained! This is really the behavior of a federal public agency gone rogue!-----https://gardn.org.au/news/my-health-record-presentation/My Health Record Presentation20, Aug 2019 ADHA PropagandaGenetic and Rare Disease Network and WA Primary Health Alliance (WAPHA) collaborated in June to bring you an information session to learn about the benefits of My Health Record and how to access the system.My Health Record is an online summary of your health information. You control what goes into your record, and who can access it. Share your health information with doctors, hospitals and other healthcare providers anywhere, anytime. My Health Record may be a valuable resource for those living... This is the initial part of the post - read more by clicking on the title of the article. David.
Source: Australian Health Information Technology - Category: Information Technology Authors: Source Type: blogs

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New Jersey dad declares war on son's incurable disease - Duchenne Muscular Dystrophy. JAR of Hope nonprofit funds start of medical infusions to slow rare disease that effects 20,000 in U.S.
Source: Disabled World - Category: Disability Tags: USA - Americas Source Type: news
Kapila Awasthi, Ranjana Arya, Alok Bhattacharya, Sudha BhattacharyaNeurology India 2019 67(5):1213-1219 Inherited neuromuscular diseases are a heterogeneous group of rare diseases for which the low general awareness leads to frequent misdiagnosis. Advances in DNA sequencing technologies are changing this situation, and it is apparent that these diseases are not as rare as previously thought. Knowledge of the pathogenic variants in patients is helping in research efforts to develop new therapies. Here we present a review of current knowledge in GNE myopathy, a rare neuromuscular disorder caused by mutations in the GNE gene...
Source: Neurology India - Category: Neurology Authors: Source Type: research
(Karolinska Institutet) Progeria is a very rare disease that affects about one in 18 million children and results in premature aging and death in adolescence from complications of cardiovascular disease. In a study on mice and human cells, researchers at Sweden's Karolinska Institute and IFOM, the FIRC Institute of Molecular Oncology in Italy, have identified how antisense oligonucleotide therapies could be used as a new possible treatment option for the disease. The results are published in Nature Communications.
Source: EurekAlert! - Medicine and Health - Category: International Medicine & Public Health Source Type: news
Discussion Holoprosencephaly (HPE) is a clefting problem of the brain. “[HPE] the result of incomplete or absent midline division of the embryonic forebrain into distinct cerebral hemispheres (prosencephalon) between the 18th and 28th day after conception.” There are four distinct subtypes: Alobar – both hemispheres are completely fused and are not separated into the left and right hemispheres. There is agenesis of the corpus callosum, arrhinencephaly and a single ventricle with fused thalami. Facial features are almost always affected. Semilobar – the cerebral hemispheres are fused anteriorly bu...
Source: PediatricEducation.org - Category: Pediatrics Authors: Tags: Uncategorized Source Type: news
Head and neck cancer is a diverse group of rare diseases such as neuroendocrine tumors which can be thought of as extrapulmonary small ‐cell cancer. Surgery, chemotherapy, and radiation can frequently cure this disease, possibly due to early detection. AbstractHead and neck cancer is a diverse group of rare diseases such as neuroendocrine tumors which can be thought of as extrapulmonary small ‐cell cancer. Surgery, chemotherapy, and radiation can frequently cure this disease, possibly due to early detection.
Source: Clinical Case Reports - Category: General Medicine Authors: Tags: CASE REPORT Source Type: research
Intravascular leiomyomatosis (IVL) is a variant of leiomyoma characterized by intravascular proliferation of a histologically benign smooth muscle tumor extending beyond the uterus into distant great vessels or the heart. It is a rare disease and results in death. Here, we reported the case of 48-year-old, otherwise well woman, who presented to the emergency department with syncope. Pulmonary CT demonstrated a large low-density shadow originating from the inferior vena cava (IVC) extending into the right atrium (RA).
Source: Annals of Vascular Surgery - Category: Surgery Authors: Tags: Case Report Source Type: research
Faces are critical social cues that must be perfectly processed in order to engage appropriately in everyday social interactions. In Prader-Willi Syndrome (PWS), a rare genetic disorder characterized by cognit...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Tags: Research Source Type: research
Neurofibromatosis type 1 (NF1) is characterized by an extreme clinical variability both within and between families that cannot be explained solely by the nature of the pathogenic NF1 gene mutations. A proposed m...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Tags: Research Source Type: research
Acquired thrombotic thrombocytopenic Purpura (aTTP) is a life-threatening ultra-orphan disease with a reported annual incidence between 1.5 and 6.0 cases per million in Europe and mainly affecting otherwise yo...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Tags: Research Source Type: research
Pigmentary mosaicism constitutes a heterogeneous group of skin pigmentation alterations associated with multisystem involvement. The aim of this study was to establish a complete cytogenetic and molecular char...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Tags: Research Source Type: research
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