The need for worldwide policy and action plans for rare diseases

Acta Paediatrica, International Journal of Paediatrics

Volumn 101, Issue 8, 2012, Pages 805-807

  Forman, John ^a   Taruscio, Domenica ^b   Llera, Virginia A ^c   Barrera, Luis A ^d   Coté, Timothy R ^e   Edfjäll, Catarina ^f   Gavhed, Désirée ^g   Haffner, Marlene E ^h   Nishimura, Yukiko ⁱ   Posada, Manuel ^j   Tambuyzer, Erik ^k   Groft, Stephen C ^l   Henter, Jan Inge ^g  

^a Wellington Mail Centre   (New Zealand)

^b ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^c Fundacion Geiser   (Argentina)

^d PONTIFICIA UNIVERSIDAD JAVERIANA   (Colombia)

^e National Organization for Rare Disorders   (United States)

^f Shire AG   (Switzerland)

^g KAROLINSKA INSTITUTE   (Sweden)

^h Haffner Associates   (United States)

ⁱ UNIVERSITY OF TOKYO   (Japan)

^j Instituto de Salud Carlos III   (Spain)

^k ABConsult   (Belgium)

^l NATIONAL INSTITUTES OF HEALTH   (United States)

more..

Author keywords

Orphan drugs; Public health; Rare diseases

Indexed keywords

CHILD; CHILDHOOD DISEASE; DEVELOPING COUNTRY; DIAGNOSTIC ACCURACY; EUROPE; HEALTH CARE ACCESS; HEALTH CARE PERSONNEL; HEALTH CARE PLANNING; HEALTH CARE POLICY; HUMAN; MEDICAL RESEARCH; PRIORITY JOURNAL; RARE DISEASE; RELIABILITY; REVIEW; UNITED STATES;

BIOMEDICAL RESEARCH; CLINICAL TRIALS AS TOPIC; HEALTH POLICY; HEALTH SERVICES ACCESSIBILITY; HUMANS; ORPHAN DRUG PRODUCTION; PATIENT ADVOCACY; PATIENT RIGHTS; RARE DISEASES; WORLD HEALTH;

EID: 84863839701     PISSN: 08035253     EISSN: 16512227     Source Type: Journal    
DOI: 10.1111/j.1651-2227.2012.02705.x     Document Type: Review

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