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Public Health (207)

Published on in Vol 3, No 2 (2014): Apr-Jun

A European Network of Email and Telephone Help Lines Providing Information and Support on Rare Diseases: Results From a 1-Month Activity Survey

A European Network of Email and Telephone Help Lines Providing Information and Support on Rare Diseases: Results From a 1-Month Activity Survey

A European Network of Email and Telephone Help Lines Providing Information and Support on Rare Diseases: Results From a 1-Month Activity Survey

Authors of this article:

Francois Houyez1 ;   Rosa Sanchez de Vega2 ;   Tuy Nga Brignol3 ;   Monica Mazzucato4 ;   Agata Polizzi5
Article Authors Cited by (7) Tweetations (5) Metrics

Journals

  1. Mazzucato M, Houyez F, Facchin P. The importance of helplines in National Plans. Orphanet Journal of Rare Diseases 2014;9(Suppl 1):O12 View
  2. Babac A, Litzkendorf S, Schmidt K, Pauer F, Damm K, Frank M, Graf von der Schulenburg J. Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians. Interactive Journal of Medical Research 2017;6(2):e23 View
  3. Kohlschütter A, van den Bussche H. Frühzeitige Diagnose einer seltenen Krankheit bei Kindern durch bessere Kommunikation zwischen Eltern, niedergelassenen Ärzten und spezialisierten Zentren. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 2019;141-142:18 View
  4. Nga Brignol T, Stalens C, Houÿez F. Participation de l’AFM-Téléthon (2012-2016) au Réseau Européen Help Lines d’Eurordis. Les Cahiers de Myologie 2018;(17):39 View
  5. Babac A, Frank M, Pauer F, Litzkendorf S, Rosenfeldt D, Lührs V, Biehl L, Hartz T, Storf H, Schauer F, Wagner T, Graf von der Schulenburg J. Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany. BMC Health Services Research 2018;18(1) View
  6. Stanimirovic D, Murko E, Battelino T, Groselj U, Zerjav Tansek M. Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach. International Journal of Environmental Research and Public Health 2021;18(23):12395 View

Books/Policy Documents

  1. Polizzi A, Taruscio D. Behçet's Syndrome. View