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Prioritization of research engaged with rare disease stakeholders: a systematic review and thematic analysis

challenging due to the limited nature of existing evidence. Rare conditions require the involvement of a wide range of stakeholders in order to promote general awareness and garner political support ... and garner political support. Consequently, it is critically important to identify trends in the various types of research focusing on rare disease stakeholders, including the specific topics or issues

Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases

recommendations. The recommendations are conceived as action statements for the management and provision of clinical care, they are not merely political or contemplative. They refer to the structure of the care ... the healthcare system. Expertise based decisions; communication of expertise to political and administrative decision makers with the involvement of patient organizations Across sector‑ care including

Exploring the support needs of Australian parents of young children with Usher syndrome: a qualitative thematic analysis

checking purposes [5]. Data analysis Interview recordings were transcribed verbatim by authors FOH and LJ (project coordinator of Australian Usher syndrome support group and Doctor of Philosophy (Clinical

Effects of social media on political participation in Turkey / Türkiye’de Sosyal Medyanın Siyasi Katılıma Etkileri

With the proliferation of social networking sites, participatory democratic practices increase, new forms of political participation emerge as alternative to the limited ways of political ... ways of political participation in representative democracies, and also online and offline political practices merge, resulting in prominent changes in political life. In recent years, social media led

EXAMINING PSHYCOLOGICALLY TO HISTORICAL , SOCIAL AND POLITICAL FIELD / TARİHİ, TOPLUMSAL ve SİYASAL ALANA PSİKANALİTİK BAKMAK ÜZERİNE

. Anahtar Kelimeler: Bilim Geleneği, Freud, Psikanaliz, Sosyal Bilimler, Sosyoanaliz EXAMİNİNG PSHYCOLOGİCALLY TO HİSTORİCAL , SOCİAL AND POLİTİCAL FİELD In Turkey, generally in social sciences but

NEW APPROACHES in MUSIC EDUCATION: THE IMPORTANCE of HUMANIST PHILOSOPHY for MUSIC EDUCATION / MÜZİK EĞİTİMİNDE YENİ YAKLAŞIMLAR: HÜMANİST FELSEFENİN MÜZİK EĞİTİMİ AÇISINDAN ÖNEMİ

This study is based on the argument that the philosophy of humanity should form the basis of the road map of music education. Giving professional music education which is provided by conservatories ... literature review / library study and qualitative research method. Music education in this study is seen as one of the important instruments of human education, exactly like in the philosophy of Greek

THE THEME OF PHILOSOPHY OF SCIENCE IN POSTMODERN SOCIAL THEORY -FOUCAULT VE DERRIDA INSTANCE / POSTMODERN SOSYAL TEORİDE BİLİM FELSEFESİ’NİN İZLEKLERİ -FOUCAULT VE DERRIDA ÖRNEĞİ

The role of philosophy of science on the formation of postmodern social theory has not been discussed as much as the role of the some of the other philosophical diciplines. At this point, by ... discuss the basic theories and arguments of some thinkers who could be named as the contemporary representatives of philosophy of science. For this purpose, Popper’s idea of falsification and criticism on

Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project

more adequate political measures including financing for care and research programs throughout Europe. The comparable epidemiological statistics in EU countries will be a powerful tool to highlight the

Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

quality of life as well as social and political issues were high on the agenda, and represent topics that the research community should focus on in addition to biological issues traditionally funded ... political aspects like quality of life, stigma or racism; or even complementary therapy. This compares to how research funds are currently allocated to biological aspects of SCD. In fact, recent data coming

Effects of socio-economic factors on research over systemic sclerosis: an analysis based on long time series of bibliometric data

0.390–0.867; p < 0.001) averagely. In middle-income countries (MICs), the effect was especially swift and lasting. No significant impact was found with GDP per capita, female percentage, and political ... , female percentage, and political indicators. Conclusions: SSc research output increased over time with substantial country disparities. Effective health policies facilitating research should be expanded

A shock to the (health) system: experiences of adults with rare disorders during the first COVID-19 wave

, political advocacy, media interviews.” Others aimed to fill a need they saw around them, like one participant who spent their time “making activated charcoal filtered masks for my family and friends, and

Challenges in the care of individuals with severe primary insulin-like growth factor-I deficiency (SPIGFD): an international, multi-stakeholder perspective

7.3 cm/year (95% CI 6.8, 7.7) (n = 81) [ 14 ]. Access to rhIGF-1 differs across geographic regions, depending on the regulatory, political, and wider socioeconomic environment. Despite being ... and Africa, people with SPIGFD are unable to access rhIGF-1 locally due to a lack of approval. Poor infrastructure, political unrest, economic challenges, or other barriers to patient safety follow-up

Halk Çevreciliğinin Ürettiği Yeni Bir Şiir Türü: ‘Ekoaktivist’ Şiir

social and environmental issues among the general public. Engaging in political ecology, ecocriticism and using ecopoem analysis, this article demonstrates that ecoactivist poetry is a political practice ... through virtual snowball technique from different localities in Turkey, analysed by interpreting the underlying ecology political messages within each of the selected poems. Keywords: poetry, ecopolitical

Clinical and genetic spectrums of 413 North African families with inherited retinal dystrophies and optic neuropathies

diagnosis represent major political, economic and health challenges for the future, to first establish accurate clinical diagnoses and then treat patients with the emergent therapies.

The PID Life Index: an interactive tool to measure the status of the PID healthcare environment in any given country

revised to consider advances in the field, as well as political developments that had occurred after their initial publication in 2014. Based on this revision the list was updated, and a new principle was ... / rare_diseases/docs/2014_rarediseases_implementationreport_en.pdf. 5. United Nations General Assembly. Political declaration of the high‑level meeting on universal health coverage . Resolution adopted by the

Together4RD position statement on collaboration between European reference networks and industry

. The various projects and sets of recommendations launched to address the gaps and shortcomings of past activities and investments are now culminating in a renewed attempt to garner political support to ... -industry collaboration; and secondly, to offer solutions and structures to overcome those barriers, and unlock potential. Securing political buy-in has been an important pillar of this work, and the

MAN’S TRAGIC END IN EUGENE IONESCO’S PLAY THE KING IS DYING: DEATH / EUGENE IONESCO’NUN KRAL ÖLÜYOR (LE ROI SE MEURT) ADLI OYUNUNDA İNSANIN TRAJİK SONU: ÖLÜM

fear of death. While treating the tragic end of man, he is influenced by the western philosophy as well as the eastern philosophy, especially by The Book of the Dead of Tibet. The king passes through all

Öteki, İktidar ve Erkeklik Ekseninde Murathan Mungan’ın “Binali ile Temir” ve “Dumrul ile Azrail” Öyküleri

establishes a bond among the miscellaneous concepts which are research topics in the fields of sociology, psychology, philosophy, history and eventually constructs a productive narrative ground. In this article

EURO-AMERICAN HEGEMONY AND LARS VON TRIER AS A ‘EUROPEAN DIRECTOR’ / AVRO-AMERİKAN HEGEMONYASI ve “AVRUPALI BİR YÖNETMEN” OLARAK LARS VON TRİER

filmography from the perspective of film study and political science. We present and examine key films by the Danish director with a view to unearth the bases of his approach to interpersonal, political and ... -seated ‘political claustrophobia’ and complete moral condemnation of Western-bourgeois culture. Başoğul , Reha. Melancholia, http://www.rehabasogul.com/ 2011 /10/22/melancholiamelankoli-lars -von-trier