RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

D. Taruscio; C. Morciano; P. Laricchiuta; P. Mincarone; F. Palazzo; C. G. Leo; S. Sabina; R. Guarino; J. Auld; T. Sejersen; D. Gavhed; K. Ritchie; M. Hilton-Boon; J. Manson; P. G. Kanavos; D. Tordrup; V. Tzouma; Y. Le Cam; J. Senecat; G. Filippini; S. Minozzi; C. Del Giovane; H. Schünemann; J. J. Meerpohl; B. Prediger; L. Schell; R. Stefanov; G. Iskrov; T. Miteva-Katrandzhieva; P. Serrano-Aguilar; L. Perestelo-Perez; M.M. Trujillo-Martín; J. Pérez-Ramos; A. Rivero-Santana; A. Brand; H. Van Kranen; K. Bushby; A. Atalaia; J. Ramet; L. Siderius; M. Posada; I. Abaitua-Borda; V. Alonso Ferreira; M. Hens-Pérez; F. J. Manzanares

doi:10.1186/1750-1172-9-S1-O14

RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

D. Taruscio^*, C. Morciano, P. Laricchiuta, P. Mincarone, F. Palazzo, C. G. Leo, S. Sabina, R. Guarino, J. Auld, T. Sejersen, D. Gavhed, K. Ritchie, M. Hilton-Boon, J. Manson, P. G. Kanavos, D. Tordrup, V. Tzouma, Y. Le Cam, J. Senecat, G. FilippiniS. Minozzi, C. Del Giovane, H. Schünemann, J. J. Meerpohl, B. Prediger, L. Schell, R. Stefanov, G. Iskrov, T. Miteva-Katrandzhieva, P. Serrano-Aguilar, L. Perestelo-Perez, M.M. Trujillo-Martín, J. Pérez-Ramos, A. Rivero-Santana, A. Brand, H. Van Kranen, K. Bushby, A. Atalaia, J. Ramet, L. Siderius, M. Posada, I. Abaitua-Borda, V. Alonso Ferreira, M. Hens-Pérez, F. J. Manzanares

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

9 Citations (Scopus)

10 Downloads (Pure)

Original language	English
Article number	O14
Journal	Orphanet Journal of Rare Diseases
Volume	9
Issue number	Suppl 1
DOIs	https://doi.org/10.1186/1750-1172-9-S1-O14
Publication status	Published - 11 Nov 2014
Externally published	Yes

Keywords

health care provider
rare disease
clinical practice guideline
scientific journal
academic institution

ASJC Scopus subject areas

Genetics(clinical)
Pharmacology (medical)

Documents and Links

10.1186/1750-1172-9-S1-O14

Taruscio, D. et al (2014) RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases
© 2014 Taruscio et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Final published version, 227 KBLicence: CC BY

Cite this

Taruscio, D., Morciano, C., Laricchiuta, P., Mincarone, P., Palazzo, F., Leo, C. G., Sabina, S., Guarino, R., Auld, J., Sejersen, T., Gavhed, D., Ritchie, K., Hilton-Boon, M., Manson, J., Kanavos, P. G., Tordrup, D., Tzouma, V., Le Cam, Y., Senecat, J., ... Manzanares, F. J. (2014). RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases. Orphanet Journal of Rare Diseases, 9(Suppl 1), Article O14. https://doi.org/10.1186/1750-1172-9-S1-O14

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author = "D. Taruscio and C. Morciano and P. Laricchiuta and P. Mincarone and F. Palazzo and Leo, {C. G.} and S. Sabina and R. Guarino and J. Auld and T. Sejersen and D. Gavhed and K. Ritchie and M. Hilton-Boon and J. Manson and Kanavos, {P. G.} and D. Tordrup and V. Tzouma and {Le Cam}, Y. and J. Senecat and G. Filippini and S. Minozzi and {Del Giovane}, C. and H. Sch{\"u}nemann and Meerpohl, {J. J.} and B. Prediger and L. Schell and R. Stefanov and G. Iskrov and T. Miteva-Katrandzhieva and P. Serrano-Aguilar and L. Perestelo-Perez and M.M. Trujillo-Mart{\'i}n and J. P{\'e}rez-Ramos and A. Rivero-Santana and A. Brand and {Van Kranen}, H. and K. Bushby and A. Atalaia and J. Ramet and L. Siderius and M. Posada and I. Abaitua-Borda and Ferreira, {V. Alonso} and M. Hens-P{\'e}rez and Manzanares, {F. J.}",

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Taruscio, D, Morciano, C, Laricchiuta, P, Mincarone, P, Palazzo, F, Leo, CG, Sabina, S, Guarino, R, Auld, J, Sejersen, T, Gavhed, D, Ritchie, K, Hilton-Boon, M, Manson, J, Kanavos, PG, Tordrup, D, Tzouma, V, Le Cam, Y, Senecat, J, Filippini, G, Minozzi, S, Del Giovane, C, Schünemann, H, Meerpohl, JJ, Prediger, B, Schell, L, Stefanov, R, Iskrov, G, Miteva-Katrandzhieva, T, Serrano-Aguilar, P, Perestelo-Perez, L, Trujillo-Martín, MM, Pérez-Ramos, J, Rivero-Santana, A, Brand, A, Van Kranen, H, Bushby, K, Atalaia, A, Ramet, J, Siderius, L, Posada, M, Abaitua-Borda, I, Ferreira, VA, Hens-Pérez, M & Manzanares, FJ 2014, 'RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases', Orphanet Journal of Rare Diseases, vol. 9, no. Suppl 1, O14. https://doi.org/10.1186/1750-1172-9-S1-O14

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T1 - RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

AU - Taruscio, D.

AU - Morciano, C.

AU - Laricchiuta, P.

AU - Mincarone, P.

AU - Palazzo, F.

AU - Leo, C. G.

AU - Sabina, S.

AU - Guarino, R.

AU - Auld, J.

AU - Sejersen, T.

AU - Gavhed, D.

AU - Ritchie, K.

AU - Hilton-Boon, M.

AU - Manson, J.

AU - Kanavos, P. G.

AU - Tordrup, D.

AU - Tzouma, V.

AU - Le Cam, Y.

AU - Senecat, J.

AU - Filippini, G.

AU - Minozzi, S.

AU - Del Giovane, C.

AU - Schünemann, H.

AU - Meerpohl, J. J.

AU - Prediger, B.

AU - Schell, L.

AU - Stefanov, R.

AU - Iskrov, G.

AU - Miteva-Katrandzhieva, T.

AU - Serrano-Aguilar, P.

AU - Perestelo-Perez, L.

AU - Trujillo-Martín, M.M.

AU - Pérez-Ramos, J.

AU - Rivero-Santana, A.

AU - Brand, A.

AU - Van Kranen, H.

AU - Bushby, K.

AU - Atalaia, A.

AU - Ramet, J.

AU - Siderius, L.

AU - Posada, M.

AU - Abaitua-Borda, I.

AU - Ferreira, V. Alonso

AU - Hens-Pérez, M.

AU - Manzanares, F. J.

PY - 2014/11/11

Y1 - 2014/11/11

KW - health care provider

KW - rare disease

KW - clinical practice guideline

KW - scientific journal

KW - academic institution

U2 - 10.1186/1750-1172-9-S1-O14

DO - 10.1186/1750-1172-9-S1-O14

M3 - Article

AN - SCOPUS:84928747941

VL - 9

JO - Orphanet Journal of Rare Diseases

JF - Orphanet Journal of Rare Diseases

IS - Suppl 1

M1 - O14

ER -