The importance of rare diseases: From the gene to Society

Archives of Disease in Childhood

Volumn 96, Issue 9, 2011, Pages 791-792

  Dodge, John A ^a   Chigladze, Tamara ^b   Donadieu, Jean ^c   Grossman, Zachi ^d   Ramos, Feliciano ^e   Serlicorni, Angelo ^f   Siderius, Liesbeth ^g   Stefanidis, Constantinos J ^h   Tasic, Velibor ⁱ   Valiulis, Arunas ^j   Wierzba, Jola ^k  

^a SWANSEA UNIVERSITY   (United Kingdom)

^b Foundation for Genetics and Rare Diseases   (Georgia)

^c ARMAND TROUSSEAU HOSPITAL   (France)

^d MACCABI HEALTHCARE SERVICES   (Israel)

^e HOSPITAL CLÍNICO UNIVERSITARIO LOZANO BLESA   (Spain)

^f UNIVERSITY OF MILANO BICOCCA   (Italy)

^g Youth Health Care   (Netherlands)

^h P AND A KYRIAKOU CHILDREN S HOSPITAL   (Greece)

ⁱ UNIVERSITY CHILDREN S HOSPITAL   (Macedonia)

^j VILNIUS UNIVERSITY   (Lithuania)

^k MEDICAL UNIVERSITY OF GDANSK   (Poland)

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Author keywords

[No Author keywords available]

Indexed keywords

ACROCEPHALOSYNDACTYLY; ATAXIA TELANGIECTASIA; CHILDHOOD DISEASE; COCKAYNE SYNDROME; CYSTIC FIBROSIS; CYSTINOSIS; ECTODERMAL DYSPLASIA; EDITORIAL; EUROPE; FANCONI ANEMIA; GENETICS; HUMAN; MEDICAL PRACTICE; MENKES SYNDROME; PATIENT CARE; PRIORITY JOURNAL; PROGERIA; PUBLIC HEALTH PROBLEM; RARE DISEASE; REFSUM DISEASE; RETT SYNDROME; SHWACHMAN SYNDROME; SOCIETY; ZELLWEGER SYNDROME;

CHILD; EUROPE; GENETIC DISEASES, INBORN; HUMANS; PREVALENCE; RARE DISEASES;

EID: 80051809902     PISSN: 00039888     EISSN: 14682044     Source Type: Journal    
DOI: 10.1136/adc.2010.193664     Document Type: Editorial

References (5)

1. Schieppati A., Henter J.I., Daina E., et al. Why rare diseases are an important medical and social issue. Lancet 2008; 371:2039-2041 (Pubitemid 351799861)
2. European Organisation for Rare Diseases (EURORDIS). What is a rare disease? http://www.eurordis.org (accessed 9 June 2010).
3. Donaldson L. On the State of the Public Health. Annual Report of the Chief Medical Officer 2009. London, HMSO 2010.
4. Aymé S., Kole A, Groft S. Empowerment of patients: lessons from the rare diseases community. Lancet 2008; 371:2048-2051 (Pubitemid 351802281)
5. Prevalence of Rare Diseases: Bibliography Data. Orphanet Report Series. Rare Diseases Collection November 2009. http://www.orpha.net (accessed 9 June 2010).