Rare diseases social epidemiology: Analysis of inequalities

Advances in Experimental Medicine and Biology

Volumn 686, Issue , 2010, Pages 223-250

  Kole, Anna ^a   Faurisson, François ^b  

^a EURORDIS   (France)

^b NONE

Author keywords

Access to care; Diagnostic delay; Orphan medicinal products availability; Rare disease patients

Indexed keywords

ORPHAN DRUG;

ARTICLE; DELAYED DIAGNOSIS; DIAGNOSTIC PROCEDURE; EUROPE; HEALTH CARE ACCESS; HEALTH CARE AVAILABILITY; HEALTH CARE ORGANIZATION; HEALTH CARE QUALITY; HEALTH CARE SYSTEM; HEALTH PERSONNEL ATTITUDE; HUMAN; KNOWLEDGE BASE; MEDICAL INFORMATION; MEDICAL SERVICE; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY CONTROL; RARE DISEASE; SOCIAL ASPECT; SOCIAL WORK; DIAGNOSTIC ERROR; DRUG MANUFACTURE; EUROPEAN UNION; FEMALE; HEALTH CARE DELIVERY; LEGAL ASPECT; NEWBORN; PREGNANCY; PRENATAL DIAGNOSIS; REVIEW;

DIAGNOSTIC ERRORS; EUROPEAN UNION; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; INFANT, NEWBORN; ORPHAN DRUG PRODUCTION; PREGNANCY; PRENATAL DIAGNOSIS; RARE DISEASES; SOCIAL WORK;

EID: 79952050684     PISSN: 00652598     EISSN: None     Source Type: Book Series    
DOI: 10.1007/978-90-481-9485-8_14     Document Type: Article

References (15)

1. Accurso FJ, Sontag MK, Wagener JS (2005) Complications associated with symptomatic diagnosis in infants with cystic fibrosis. J Pediatr 147(3 Suppl):S37-S41 (Pubitemid 41400257)
2. Barataud B (1992) Au nom de nos enfants. Edition no. 1, Paris
3. Bennett FC, Guralnick MJ (1991) Effectiveness of development intervention in the first five years of life. Pediatr Clin North Am 38(6):1513-1528
4. 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. SEC(2006) 832(20.06.06). http://ec.europa.eu/enterprise/pharmaceuticals/orphanmp/doc/orphan-en-06-2006. pdf . Cited 28 Sept 2009
5. De Varax A, Lettelier M, Bortlein M (2004) Study on orphan drugs. Phase II: consideration on the application of article 8.2 of EU regulation 141/2000 concerning orphan drugs. Available via ALCIMED. http://ec.europa.eu/enterprise/ pharmaceuticals/orphanmp/doc/pricestudy/final-final-report-part-1-web.pdf . Cited 28 Sept 2009
6. European Pharamaceutical Forum (2008) Improving access to orphan medicines for all affected EU citizens. http://ec.europa.eu/pharmaforum/docs/ pricing-orphans-en.pdf . Cited 28 Sept 2009
7. EURORDIS (2005) Rare diseases: understanding this Public Health Priority. http://www.eurordis.org/IMG/pdf/princeps-document-EN.pdf . Cited 28 Sept 2009
8. EURORDIS (2008) 4th Eurordis Survey shows Unequal Access to Orphan Drugs in Europe. http://www.eurordis.org/article.php3?id-article=1620&var- recherche=orphan+drugs
9. EURORDIS (2009) EURORDIS Proposal for the Practical Implementation of Policy Principles to Improve Access to Orphan Drugs in the EU. http://www.eurordis.org/IMG/pdf/pos-paper-access-OD-Sept09.pdf . Cited 28 Sept 2009
10. Kharrazi M, Kharrazi LD (2005) Delayed diagnosis of cystic fibrosis and the family perspecitve. J Pediatr 147(3 suppl):S21-S25 (Pubitemid 41400254)
11. Manusov EG, Martucci E (1994) The Marfan syndrome: an underdiagnosed killer. Arch Fam Med 3(9):822-826
12. Merelle ME, Huisman J, Alderden-van der Vecht A, Taat F, Bezemer D, Griffioen RW, et al (2003) Early versus late diagnosis: psychological impact on parents of children with cystic fibrosis. Pediatrics 111(2):346-350 (Pubitemid 36177155)
13. Regulation (EC) No 141/2000 of the European Parliament and of the Council of December 16, 1999 on orphan medicinal products (2000). Official J Euro Commun 43(L18):1-5
14. Vogels A, Fryns JP (2004) Age at diagnosis, body mass index and physical morbidity in children and adults with Prader-Willi syndrome. Genet Couns 15(4):397-404 (Pubitemid 40039484)
15. World Health Organisation (1946). Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.