Literature DB >> 31553321

Health systems sustainability in the framework of rare diseases actions. Actions on educational programmes and training for professionals and patients.

Emilia Severin1, Marta De Santis2, Rita Maria Ferrelli3, Domenica Taruscio2.   

Abstract

Rare disease community is one of the largest patient populations in the world estimated to be 350 million of people. Collectively common, rare diseases pose a significant medical and economic burden for health systems worldwide. In this respect, rare diseases are considered a priority of public health. The study is a review aimed to determine whether there is evidence that education plays a key role in building sustainable health system and will allow better health and well-being for people with rare diseases to be achieved. This review shows evidence that providing quality education through different ways and actions the lives of people suffering from a rare disease and their families can be improved.

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Year:  2019        PMID: 31553321     DOI: 10.4415/ANN_19_03_12

Source DB:  PubMed          Journal:  Ann Ist Super Sanita        ISSN: 0021-2571            Impact factor:   1.663


  3 in total

Review 1.  Raising rare disease awareness using red flags, role play simulation and patient educators: results of a novel educational workshop on Raynaud phenomenon and systemic sclerosis.

Authors:  S Sanges; M-M Farhat; M Assaraf; J Galland; E Rivière; C Roubille; M Lambert; C Yelnik; H Maillard; V Sobanski; G Lefèvre; D Launay; S Morell-Dubois; E Hachulla
Journal:  Orphanet J Rare Dis       Date:  2020-06-23       Impact factor: 4.123

2.  Educational and knowledge gaps within the European reference network on rare endocrine conditions.

Authors:  Violeta Iotova; Camilla Schalin-Jäntti; Petra Bruegmann; Manuela Broesamle; Natasa Bratina; Vallo Tillmann; Olaf Hiort; Alberto M Pereira
Journal:  Endocr Connect       Date:  2021-01       Impact factor: 3.335

3.  Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders.

Authors:  Violeta Iotova; Camilla Schalin-Jäntti; Petra Bruegmann; Manuela Broesamle; Johan De Graaf; Natasa Bratina; Vallo Tillmann; Alberto M Pereira; Olaf Hiort
Journal:  Endocrine       Date:  2021-02-18       Impact factor: 3.633

  3 in total

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