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Showing 1 to 12 of 34 entries
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[Rare Diseases].

Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz

Weber S, Grüters-Kieslich A.
PMID: 28421247
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):477-478. doi: 10.1007/s00103-017-2542-9.

No abstract available.

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Weber S, Grüters-Kieslich A. Seltene Erkrankungen. [Rare Diseases]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017;60(5):477-478doi: 10.1007/s00103-017-2542-9.
Weber, S., & Grüters-Kieslich, A. (2017). Seltene Erkrankungen. [Rare Diseases]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz, 60(5), 477-478. https://doi.org/10.1007/s00103-017-2542-9
Weber, Stefanie, and Grüters-Kieslich, Annette. "Seltene Erkrankungen." [Rare Diseases]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz vol. 60,5 (2017): 477-478. doi: https://doi.org/10.1007/s00103-017-2542-9
Weber S, Grüters-Kieslich A. Seltene Erkrankungen. [Rare Diseases]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):477-478. doi: 10.1007/s00103-017-2542-9. German. PMID: 28421247.
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[European Reference Networks : Consequences for healthcare in Germany].

Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz

Graessner H, Schäfer F, Scarpa M, Wagner TOF.
PMID: 28275837
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):537-541. doi: 10.1007/s00103-017-2533-x.

Starting in 2017, European Reference Networks (ERNs) for rare disease patients will be established in the European Union. ERNs will pool expertise in clinical centres and will establish cross-border exchange mechanisms in order to facilitate access to diagnosis and...

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Graessner H, Schäfer F, Scarpa M, et al. Europäische Referenznetzwerke : Konsequenzen für die Gesundheitsversorgung in Deutschland. [European Reference Networks : Consequences for healthcare in Germany]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017;60(5):537-541doi: 10.1007/s00103-017-2533-x.
Graessner, H., Schäfer, F., Scarpa, M., & Wagner, T. O. F. (2017). Europäische Referenznetzwerke : Konsequenzen für die Gesundheitsversorgung in Deutschland. [European Reference Networks : Consequences for healthcare in Germany]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz, 60(5), 537-541. https://doi.org/10.1007/s00103-017-2533-x
Graessner, Holm, et al. "Europäische Referenznetzwerke : Konsequenzen für die Gesundheitsversorgung in Deutschland." [European Reference Networks : Consequences for healthcare in Germany]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz vol. 60,5 (2017): 537-541. doi: https://doi.org/10.1007/s00103-017-2533-x
Graessner H, Schäfer F, Scarpa M, Wagner TOF. Europäische Referenznetzwerke : Konsequenzen für die Gesundheitsversorgung in Deutschland. [European Reference Networks : Consequences for healthcare in Germany]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):537-541. doi: 10.1007/s00103-017-2533-x. German. PMID: 28275837.
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International rare cancers initiative.

The Lancet. Oncology

Keat N, Law K, Seymour M, Welch J, Trimble T, Lascombe D, Negrouk A.
PMID: 23369681
Lancet Oncol. 2013 Feb;14(2):109-10. doi: 10.1016/S1470-2045(12)70570-3.

No abstract available.

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Keat N, Law K, Seymour M, et al. International rare cancers initiative. Lancet Oncol. 2013;14(2):109-10doi: 10.1016/S1470-2045(12)70570-3.
Keat, N., Law, K., Seymour, M., Welch, J., Trimble, T., Lascombe, D., & Negrouk, A. (2013). International rare cancers initiative. The Lancet. Oncology, 14(2), 109-10. https://doi.org/10.1016/S1470-2045(12)70570-3
Keat, Nicola, et al. "International rare cancers initiative." The Lancet. Oncology vol. 14,2 (2013): 109-10. doi: https://doi.org/10.1016/S1470-2045(12)70570-3
Keat N, Law K, Seymour M, Welch J, Trimble T, Lascombe D, Negrouk A. International rare cancers initiative. Lancet Oncol. 2013 Feb;14(2):109-10. doi: 10.1016/S1470-2045(12)70570-3. PMID: 23369681.
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The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community.

Orphanet journal of rare diseases

Aymé S, Rodwell C.
PMID: 24580800
Orphanet J Rare Dis. 2014 Feb 28;9:30. doi: 10.1186/1750-1172-9-30.

The European Union Committee of Experts on Rare Diseases was entrusted with aiding the European Commission in a number of tasks, ranging from the monitoring of initiatives, to recommending improvements and actions to be pursued in the future, in...

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Aymé S, Rodwell C. The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community. Orphanet J Rare Dis. 2014;9:30doi: 10.1186/1750-1172-9-30.
Aymé, S., & Rodwell, C. (2014). The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community. Orphanet journal of rare diseases, 930. https://doi.org/10.1186/1750-1172-9-30
Aymé, Ségolène, and Rodwell, Charlotte. "The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community." Orphanet journal of rare diseases vol. 9 (2014): 30. doi: https://doi.org/10.1186/1750-1172-9-30
Aymé S, Rodwell C. The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community. Orphanet J Rare Dis. 2014 Feb 28;9:30. doi: 10.1186/1750-1172-9-30. PMID: 24580800; PMCID: PMC3942519.
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Orphan lung diseases.

Seminars in respiratory and critical care medicine

Ryu JH.
PMID: 23001797
Semin Respir Crit Care Med. 2012 Oct;33(5):431-2. doi: 10.1055/s-0032-1325153. Epub 2012 Sep 21.

No abstract available.

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Ryu JH. Orphan lung diseases. Semin Respir Crit Care Med. 2012;33(5):431-2doi: 10.1055/s-0032-1325153.
Ryu, J. H. (2012). Orphan lung diseases. Seminars in respiratory and critical care medicine, 33(5), 431-2. https://doi.org/10.1055/s-0032-1325153
Ryu, Jay H. "Orphan lung diseases." Seminars in respiratory and critical care medicine vol. 33,5 (2012): 431-2. doi: https://doi.org/10.1055/s-0032-1325153
Ryu JH. Orphan lung diseases. Semin Respir Crit Care Med. 2012 Oct;33(5):431-2. doi: 10.1055/s-0032-1325153. Epub 2012 Sep 21. PMID: 23001797.
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RaDiCo, the French national research program on rare disease cohorts.

Orphanet journal of rare diseases

Amselem S, Gueguen S, Weinbach J, Clement A, Landais P.
PMID: 34715889
Orphanet J Rare Dis. 2021 Oct 29;16(1):454. doi: 10.1186/s13023-021-02089-5.

BACKGROUND: Rare diseases (RDs) affect nearly 3 million people in France and at least 26-30 million people in Europe. These diseases, which represent a major medical concern, are mainly of genetic origin, often chronic, progressive, degenerative, life threatening and...

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Amselem S, Gueguen S, Weinbach J, et al. RaDiCo, the French national research program on rare disease cohorts. Orphanet J Rare Dis. 2021;16(1):454doi: 10.1186/s13023-021-02089-5.
Amselem, S., Gueguen, S., Weinbach, J., Clement, A., Landais, P. (2021). RaDiCo, the French national research program on rare disease cohorts. Orphanet journal of rare diseases, 16(1), 454. https://doi.org/10.1186/s13023-021-02089-5
Amselem, Serge, et al. "RaDiCo, the French national research program on rare disease cohorts." Orphanet journal of rare diseases vol. 16,1 (2021): 454. doi: https://doi.org/10.1186/s13023-021-02089-5
Amselem S, Gueguen S, Weinbach J, Clement A, Landais P. RaDiCo, the French national research program on rare disease cohorts. Orphanet J Rare Dis. 2021 Oct 29;16(1):454. doi: 10.1186/s13023-021-02089-5. PMID: 34715889; PMCID: PMC8555205.
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Graves' orbitopathy as a rare disease in Europe: a European Group on Graves' Orbitopathy (EUGOGO) position statement.

Orphanet journal of rare diseases

Perros P, Hegedüs L, Bartalena L, Marcocci C, Kahaly GJ, Baldeschi L, Salvi M, Lazarus JH, Eckstein A, Pitz S, Boboridis K, Anagnostis P, Ayvaz G, Boschi A, Brix TH, Currò N, Konuk O, Marinò M, Mitchell AL, Stankovic B, Törüner FB, von Arx G, Zarković M, Wiersinga WM.
PMID: 28427469
Orphanet J Rare Dis. 2017 Apr 20;12(1):72. doi: 10.1186/s13023-017-0625-1.

BACKGROUND: Graves' orbitopathy (GO) is an autoimmune condition, which is associated with poor clinical outcomes including impaired quality of life and socio-economic status. Current evidence suggests that the incidence of GO in Europe may be declining, however data on...

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Perros P, Hegedüs L, Bartalena L, et al. Graves' orbitopathy as a rare disease in Europe: a European Group on Graves' Orbitopathy (EUGOGO) position statement. Orphanet J Rare Dis. 2017;12(1):72doi: 10.1186/s13023-017-0625-1.
Perros, P., Hegedüs, L., Bartalena, L., Marcocci, C., Kahaly, G. J., Baldeschi, L., Salvi, M., Lazarus, J. H., Eckstein, A., Pitz, S., Boboridis, K., Anagnostis, P., Ayvaz, G., Boschi, A., Brix, T. H., Currò, N., Konuk, O., Marinò, M., Mitchell, A. L., Stankovic, B., Törüner, F. B., von Arx, G., Zarković, M., & Wiersinga, W. M. (2017). Graves' orbitopathy as a rare disease in Europe: a European Group on Graves' Orbitopathy (EUGOGO) position statement. Orphanet journal of rare diseases, 12(1), 72. https://doi.org/10.1186/s13023-017-0625-1
Perros, P, et al. "Graves' orbitopathy as a rare disease in Europe: a European Group on Graves' Orbitopathy (EUGOGO) position statement." Orphanet journal of rare diseases vol. 12,1 (2017): 72. doi: https://doi.org/10.1186/s13023-017-0625-1
Perros P, Hegedüs L, Bartalena L, Marcocci C, Kahaly GJ, Baldeschi L, Salvi M, Lazarus JH, Eckstein A, Pitz S, Boboridis K, Anagnostis P, Ayvaz G, Boschi A, Brix TH, Currò N, Konuk O, Marinò M, Mitchell AL, Stankovic B, Törüner FB, von Arx G, Zarković M, Wiersinga WM. Graves' orbitopathy as a rare disease in Europe: a European Group on Graves' Orbitopathy (EUGOGO) position statement. Orphanet J Rare Dis. 2017 Apr 20;12(1):72. doi: 10.1186/s13023-017-0625-1. PMID: 28427469; PMCID: PMC5397790.
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Challenges of rare diseases in China.

Lancet (London, England)

Dong D, Wang Y.
PMID: 27203652
Lancet. 2016 May 07;387(10031):1906. doi: 10.1016/S0140-6736(16)30418-4.

No abstract available.

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Dong D, Wang Y. Challenges of rare diseases in China. Lancet. 2016;387(10031):1906doi: 10.1016/S0140-6736(16)30418-4.
Dong, D., & Wang, Y. (2016). Challenges of rare diseases in China. Lancet (London, England), 387(10031), 1906. https://doi.org/10.1016/S0140-6736(16)30418-4
Dong, Dong, and Wang, Yiou. "Challenges of rare diseases in China." Lancet (London, England) vol. 387,10031 (2016): 1906. doi: https://doi.org/10.1016/S0140-6736(16)30418-4
Dong D, Wang Y. Challenges of rare diseases in China. Lancet. 2016 May 07;387(10031):1906. doi: 10.1016/S0140-6736(16)30418-4. PMID: 27203652.
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[Rare diseases, a public health issue].

Soins. Pediatrie, puericulture

Donnart A, Viollet V, Roinet-Tournay M.
PMID: 24228329
Soins Pediatr Pueric. 2013 Sep-Oct;(274):17-9.

Under the influence of patients' associations, rare diseases have gradually become recognised as a public health issue. A first Rare Diseases National Plan, from 2005-2008, endeavoured to facilitate diagnosis and access to care. A second Plan, for 2011-2014, aims...

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Donnart A, Viollet V, Roinet-Tournay M. Les maladies rares, un enjeu de santé publique. [Rare diseases, a public health issue]. Soins Pediatr Pueric. 2013;(274):17-9
Donnart, A., Viollet, V., & Roinet-Tournay, M. (2013). Les maladies rares, un enjeu de santé publique. [Rare diseases, a public health issue]. Soins. Pediatrie, puericulture, (274), 17-9.
Donnart, Alain, et al. "Les maladies rares, un enjeu de santé publique." [Rare diseases, a public health issue]. Soins. Pediatrie, puericulture vol. ,274 (2013): 17-9.
Donnart A, Viollet V, Roinet-Tournay M. Les maladies rares, un enjeu de santé publique. [Rare diseases, a public health issue]. Soins Pediatr Pueric. 2013 Sep-Oct;(274):17-9. French. PMID: 24228329.
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10 Years of Rare Disease Day.

Gene therapy

Yáñez-Muñoz RJ.
PMID: 28228645
Gene Ther. 2017 Feb;24(2):67. doi: 10.1038/gt.2017.7.

No abstract available.

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Yáñez-Muñoz RJ. 10 Years of Rare Disease Day. Gene Ther. 2017;24(2):67doi: 10.1038/gt.2017.7.
Yáñez-Muñoz, R. J. (2017). 10 Years of Rare Disease Day. Gene therapy, 24(2), 67. https://doi.org/10.1038/gt.2017.7
Yáñez-Muñoz, R J. "10 Years of Rare Disease Day." Gene therapy vol. 24,2 (2017): 67. doi: https://doi.org/10.1038/gt.2017.7
Yáñez-Muñoz RJ. 10 Years of Rare Disease Day. Gene Ther. 2017 Feb;24(2):67. doi: 10.1038/gt.2017.7. PMID: 28228645.
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European Reference Networks for Rare Diseases: the vision of patients.

Blood transfusion = Trasfusione del sangue

Andersen T, Le Cam Y, Weinman A.
PMID: 24922305
Blood Transfus. 2014 Apr;12:s626-7. doi: 10.2450/2014.0039-14s.

No abstract available.

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Andersen T, Le Cam Y, Weinman A. European Reference Networks for Rare Diseases: the vision of patients. Blood Transfus. 2014;12:s626-7doi: 10.2450/2014.0039-14s.
Andersen, T., Le Cam, Y., & Weinman, A. (2014). European Reference Networks for Rare Diseases: the vision of patients. Blood transfusion = Trasfusione del sangue, 12s626-7. https://doi.org/10.2450/2014.0039-14s
Andersen, Terkel, et al. "European Reference Networks for Rare Diseases: the vision of patients." Blood transfusion = Trasfusione del sangue vol. 12 (2014): s626-7. doi: https://doi.org/10.2450/2014.0039-14s
Andersen T, Le Cam Y, Weinman A. European Reference Networks for Rare Diseases: the vision of patients. Blood Transfus. 2014 Apr;12:s626-7. doi: 10.2450/2014.0039-14s. PMID: 24922305; PMCID: PMC4044799.
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Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider.

International journal of environmental research and public health

Talarico R, Marinello D, Cannizzo S, Gaglioti A, Ticciati S, Carta C, Kodra Y, Azadegan M, Taruscio D, Mosca M, Turchetti G.
PMID: 33238523
Int J Environ Res Public Health. 2020 Nov 23;17(22). doi: 10.3390/ijerph17228694.

The unexpected outbreak of the COVID-19 disease had significant and enormous repercussions on the healthcare systems, such as the need to reorganise healthcare organisations in order to concentrate resources needed to the care of COVID-19 patients and to respond...

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Talarico R, Marinello D, Cannizzo S, et al. Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider. Int J Environ Res Public Health. 2020;17(22)doi: 10.3390/ijerph17228694.
Talarico, R., Marinello, D., Cannizzo, S., Gaglioti, A., Ticciati, S., Carta, C., Kodra, Y., Azadegan, M., Taruscio, D., Mosca, M., & Turchetti, G. (2020). Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider. International journal of environmental research and public health, 17(22), . https://doi.org/10.3390/ijerph17228694
Talarico, Rosaria, et al. "Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider." International journal of environmental research and public health vol. 17,22 (2020). doi: https://doi.org/10.3390/ijerph17228694
Talarico R, Marinello D, Cannizzo S, Gaglioti A, Ticciati S, Carta C, Kodra Y, Azadegan M, Taruscio D, Mosca M, Turchetti G. Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider. Int J Environ Res Public Health. 2020 Nov 23;17(22). doi: 10.3390/ijerph17228694. PMID: 33238523; PMCID: PMC7700629.
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Showing 1 to 12 of 34 entries