rare disease

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1
Focusing on basic data and a model of healthcare security for rare diseases: The Multidisciplinary Expert Seminar on Healthcare Security for Rare Diseases in China was held in Beijing.
Kang, Qi;Jin, Chunlin;Li, Dingguo;
2019 intractable & rare diseases research DOI: 10.5582/irdr.2019.01... 227 views
2
Paces of Costly Care: Rare Disease Drug Access in Canada.
McGuire, Marlee;
2019 medical anthropology DOI: 10.1080/01459740.201... 333 views
3
Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders.
Currie, Genevieve;Szabo, Joanna;
2020 International journal of qualitative studies on he... DOI: 10.1080/17482631.202... 316 views
4
authentication of patients and participants in health information exchange and consent for medical research: a key step for privacy protection, respect for autonomy, and trustworthiness
;Atsushi Kogetsu;Soichi Ogishima;Kazuto Kato
2018 chemical record (new york, ny) DOI: 10.3389/fgene.2018.0... 235 views
5
fam20a gene mutation: amelogenesis or ectopic mineralization?
;Guilhem Lignon;Fleur Beres;Mickael Quentric;Stephan Rouzière;Raphael Weil;Muriel De La Dure-Molla;A...
2017 Journal of clinical and experimental dentistry DOI: 10.3389/fphys.2017.0... 213 views
6
Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.
Adang, Laura Ann;Sevagamoorthy, Anjana;Sherbini, Omar;Fraser, Jamie L;Bonkowsky, Joshua L;Gavazzi, F...
2024 Molecular genetics and metabolism DOI: 10.1016/j.ymgme.2024... 37 views
7
Research Letter: The state of academic psychiatry in Aotearoa New Zealand and Australia: Data from a survey of the Royal Australian and New Zealand College of Psychiatrists membership.
Northwood, Korinne;Eggleston, Katherine;Every-Palmer, Susanna;Galbally, Megan;Warren, Nicola;Berk, M...
2024 The Australian and New Zealand journal of psychiat... DOI: 10.1177/000486742412... 37 views
8
Safety and efficacy of givinostat in boys with Duchenne muscular dystrophy (EPIDYS): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial.
Mercuri, Eugenio;Vilchez, Juan J;Boespflug-Tanguy, Odile;Zaidman, Craig M;Mah, Jean K;Goemans, Natha...
2024 The Lancet. Neurology DOI: 10.1016/S1474-4422(2... 45 views

Related Journals

International journal of qualitative studies on health and well-being
ISSN: 1748-2631 608 views
open access macedonian journal of medical sciences
ISSN: 1857-9655 685 views
intractable & rare diseases research
ISSN: 2186-3644 294 views
The Australian and New Zealand journal of psychiatry
ISSN: 0004-8674 522 views
urology journal
ISSN: 1735-546X 394 views
medical anthropology
ISSN: 1545-5882 437 views
Molecular genetics and metabolism
ISSN: 1096-7206 273 views
The Lancet. Neurology
ISSN: 1474-4465 140 views

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expert discussion healthcare security multidiscipline value valorisation canada couverture universelle sanitaire l’accès aux medicaments maladies rares pharmaceutical access temporality temporalité universal health care Children parents healthcare caregivers chronic disease neurodevelopmental disorders experience of healthcare