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10 health stories that mattered: Mar. 3-7.

https://arctichealth.org/en/permalink/ahliterature104776
Source
CMAJ. 2014 Apr 15;186(7):E209
Publication Type
Article
Date
Apr-15-2014

[Centralized treatment of rare types of cancer]

https://arctichealth.org/en/permalink/ahliterature18648
Source
Tidsskr Nor Laegeforen. 2002 Sep 10;122(21):2088
Publication Type
Article
Date
Sep-10-2002
Author
Baard-Christian Schem
Source
Tidsskr Nor Laegeforen. 2002 Sep 10;122(21):2088
Date
Sep-10-2002
Language
Norwegian
Publication Type
Article
Keywords
Centralized Hospital Services - organization & administration
Humans
Neoplasms - therapy
Norway
Rare Diseases - therapy
PubMed ID
12555641 View in PubMed
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[Rarity--a separate criterion used in prioritization?].

https://arctichealth.org/en/permalink/ahliterature104759
Source
Tidsskr Nor Laegeforen. 2014 Mar 11;134(5):534-6
Publication Type
Article
Date
Mar-11-2014
Author
Arvid Heiberg
Jan Frich
John-Arne Røttingen
Source
Tidsskr Nor Laegeforen. 2014 Mar 11;134(5):534-6
Date
Mar-11-2014
Language
Norwegian
Publication Type
Article
Keywords
Health Policy
Health Priorities - organization & administration
Humans
Norway
Rare Diseases - therapy
Notes
Comment In: Tidsskr Nor Laegeforen. 2014 Apr 29;134(8):80924780960
Comment In: Tidsskr Nor Laegeforen. 2014 Apr 29;134(8):809-1024780961
PubMed ID
24621914 View in PubMed
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[The normative legal regulation of medical care support of rare (orphan) diseases in adult population of The Russian Federation].

https://arctichealth.org/en/permalink/ahliterature311875
Source
Probl Sotsialnoi Gig Zdravookhranenniiai Istor Med. 2021 Mar; 29(2):270-277
Publication Type
Journal Article
Date
Mar-2021
Author
T P Vasilieva
I A Komarov
O Yu Aleksandrova
R A Zinchenko
Author Affiliation
N. A. Semashko National Research Institute of Public Health, 105064, Moscow, Russia.
Source
Probl Sotsialnoi Gig Zdravookhranenniiai Istor Med. 2021 Mar; 29(2):270-277
Date
Mar-2021
Language
Russian
Publication Type
Journal Article
Keywords
Adult
Humans
Patient Care
Primary Health Care
Rare Diseases - therapy
Russia
Abstract
The article considers the results of legal regulation analysis of medical care support including medication maintenance of adult patients suffering from rare diseases exemplified by life-threatened and chronic progressed rare (orphan) diseases resulting in life expectancy decrease and or disability ("List-24").
Law database was analyzed in terms of current orders of medical care provision, standards of medical care, and clinical guidelines for rare diseases from "List-24" regarding to adult patients.
It is concluded that there are no determined rules of medical care provision to adult population in case of rare diseases from "List-24". There are standards of medical care on 6 rare diseases (25% of total diseases amount) from this list for adult patients. However, based on content analysis data of approved standards it was established that there are only 3 from 11 standards (27.28%) for primary medical care support, 4 standards (33.34%) for medical care provision in planned condition, and only 1 standard (9.09%) had appropriate legal basis for its development (clinical guidelines availability). Nevertheless, there is negative prognosis for this the only standard due to legal necessity of all clinical guidelines revision till the end of 2021.
Revision and creation of clinical guidelines and standards of medical care afterwards are needed for adult patients treatment with rare diseases from "List-24". The conclusion was made in terms of medical care standardization improvement for adult patients suffering from rare diseases from "List-24" based on its alignment with current legal regulation.
PubMed ID
33901367 View in PubMed
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With a disease for every day, who will care for the orphans?

https://arctichealth.org/en/permalink/ahliterature106216
Source
CMAJ. 2013 Nov 19;185(17):1475
Publication Type
Article
Date
Nov-19-2013
Author
Diane Kelsall
Source
CMAJ. 2013 Nov 19;185(17):1475
Date
Nov-19-2013
Language
English
Publication Type
Article
Keywords
Canada
Child
Child, Orphaned
Disease Management
Female
Foster Home Care - methods
Humans
Male
Rare Diseases - therapy
Notes
Comment In: CMAJ. 2014 Apr 1;186(6):45324688066
Comment In: CMAJ. 2014 Apr 1;186(6):45224688063
Comment In: CMAJ. 2014 Apr 1;186(6):45224688064
Comment In: CMAJ. 2014 Apr 1;186(6):452-324688065
PubMed ID
24218533 View in PubMed
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