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Órgano Oficial del Instituto Nacional de Pediatría

2015, Number 5

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Acta Pediatr Mex 2015; 36 (5)

Rare diseases

Carbajal RL, Navarrete MJI

Language: Spanish
References: 32
Page: 369-373
PDF size: 323.27 Kb.


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REFERENCES

  1. International Conference on Rare Diseases and Orphan Drugs (ICORD) «The Yukiwariso Declaration» (http://icord.se/main-menu/yukiwariso).

  2. Prevalence of rare diseases: Bibliographic data. Listed in order of decreasingprevalence or number of published case. Orphanet Report Series, Rare Diseases collection. Nov. 2013. http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence of_rare_diseases_by_decreasingprevalence_or_cases.pdf).

  3. OMS (20l2). Unidos para combatir las enfermedades raras. Boletín de la Organización Mundial de la Salud 2012;90(6):471-476. http://www.who. int/bulletin/volumes/90/6/12-020612/

  4. Useful Information on Rare Diseases from an EU Perspective. European Commission. http://ec.europa.eu/health/ph_information/documents/ev20040705_rd05_en.pdf

  5. Comisión Europea. Las enfermedades raras: un desafío para Europa. http://ec.europa.eu/health/ph_threats/non_com/docs/raredis_com_es.pdt

  6. Public Law 97-414: Orphan Drug Act (1983), designation of drugs for' rare diseases or conditions, en www.fda.gov http://www.fda.gov/regulatoryinformation/legislation/federalfooddrugandcosmeticactfdcact/significantamendmentothefcact/orphandrugact/default.htm

  7. Rare Diseases: Understanding This Public Health Priority (http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf). European Organization for Rare Diseases (EURORDIS). Nov. 2005.

  8. February 29 is Rare Disease Day in Europe. http://www.novartis.com/newsroom/news/2008-02-28_rare-diseaseday.shtml

  9. Rare Disease en: http://ec.europa.eu/health-eu/health_problems/rare _diseases/index_en.htm

  10. van de Laar FA, Bor H, van de Lisdonk EH.Prevalence of zebras in general practice: data from the Continuous Morbidity Registration Nijmegen. Eur J Gen Pract. 14. 2008;Suppl1(s1):44-6. doi:10.1080/13814780802436176

  11. What is a Genetic Disease. http://www.geneticalliance.org/ws_display.asp?filter=diseases&char=%23&s_Diseases=Genetic AlIiance

  12. «The National Organization for Rare Disorders (NORD) (http://www.reuters.com/article/pressRelease/idUS81376+05-May-2008+BW20080505) Reuters. 5 de mayo de 2008.

  13. Canadian Organization for Rare Disorders. (http://www.raredisorders.ca).

  14. Federación Española de Enfermedades Raras (FEDER) Quienes somos (httpl/www.enfermedades-raras.org/index.php?option=com_content&view=article&id=289<emid=130)

  15. Fundación Geiser-Misión, Visión, objetivos. http://www.fundaciongeiser.orglgeiserlmision-vision-objetivos/

  16. Federación Colombiana de Enfermedades Raras (FECOER)- Nuestra Historia. http://www.fecoer.org/nuestra-historia/

  17. Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003): http:/europa.eu.int/eur-lex/pri/en/oj/dat/1999/l_155/1_15519990622en00010005.pdf

  18. Consulta Pública las Enfermedades Raras: Un Desafío para Europa. Comisión Europea Dirección General de Sanidad y Protección de los Consumidores Comisión Europea, L-2920 Luxemburgo. 2008 http://ec.europa.eu/health/ph_threats/non_com/docs/raredis_comm_es.pdf

  19. Rmialle-gómara E, González MA, Perucha M, Quiñones C, Lezaun ME, Posada de la Paz M, en nombre del Grupo REplER (Red de Investigación Epidemiológica de Enfermedades Raras). Mortalidad por la enfermedad de Huntington en España en el período 1981- 2004. Rev Neurol 2007;45:88-90.

  20. Botella Rocamora P, Zurriaga Lloréns O, Posada de la Paz M, Martínez Beneito MA, Belprieto E, Robustillo Rodela A. en el nombre de REpIER. Atlas Nacional/Provincial de Enfermedades Raras 1999-2003. REpIER editores. 2006.

  21. Zurriaga Lloréns O, Martínez García C, Arizo Luque V, Sánchez Pérez MJ, Ramos Aceitero JM, García Blasco MJ en nombre de los integrantes de la Red REpIER. Los Registros de Enfermedades en la Investigación Epidemiológica de las Enfermedades Raras en España. Rev Esp Salud Pública 2005;80:249-257.

  22. Sánchez-Valle E, Posada M, Villaverde-Hueso A, Touriño E, Ferrari-Arroyo MJ, Boada L. Estimating the burden of disease for autism spectrum disorders in Spain in 2003. J Autism Dev Disord DOI 10.1007/sl0803- 007-0393-1.

  23. The genetic conception of health: is it as radical as claimed? Petersen A. Health 2006;10:481-500.

  24. World Health Organization. International Statistical Classification of Diseases and Related Health Problems 10th Revision. Version for 2006. http:/jwww.who.int/classifications/apps/icd/icdl0online/

  25. Orphanet. Prévalence des maladies rares: Une enquéte bibliographique. Octobre 2007. Les Cahiers d'orphanet 2007;1-42.

  26. Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products: http://eurlex.europa.eu/LexUriServ/site/es/oj/2000/1_018/1_01820000122es00010005.pdf

  27. European Medicines Agency (EMEA). Points to consider on the calculations and reporting of prevalence of a condition for orphan designation. London. 26.Mar.2002 COMP/436/01. http://www.emea.eu.int/pdfs/human/comp/ 043601.pdf

  28. Commission of the European Communities. Commission Staff Working Document on the experience acquired as a result of the application of Regulation (EC) No 141/2000 on orphan medicinal products and account of the public health benefits obtained Document on the basis 01 Article 10 of Regulation (EC). Brusells 2006. http://ec.europa.eu/enterprise/pharmaceuticals/orphanmp/doc/orphan_en_06-2006.pdf

  29. Rare Diseases Task Force. Centres of Reference for rare diseases in Europe: State-of-the-art in 2006 and recommendations of the Rare Diseases Task Force. http://ec.europa.eu/health/ph_threats(non_com/clocs/contribution_policy.pdf

  30. Ministerio de la Salud y de la Protección Social. Plan Nacional Francés para las Enfermedades Raras 2005-2008. Asegurar la equidad para el acceso al diagnóstico, a los tratamientos y a la atención. http://www.eurordis.org/IMG/pdf/SN_plan_nacional_frances_enfermedades_raras.pdf

  31. Pathologies couvertes par les centres de reférence pour une maladie rare ou un groupe de maladies rares Iabellisés en 2004, 2005 et 2006. http://www.sante.gouv.fr/htm/dossiers/maladies_rares/maladies_0.htm

  32. DG Sanidad y Protección de los Consumidores. Comisión Europea. The Health Programme 2008-2013. http://ec:.europa.eu/health/ph_programme/ pgm2008_2013_en.htm




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