USEFUL LINKS
UMBRELLA SCIENTIFIC ORGANIZATIONS
AECOM Asociación Española para el Estudio de los Errores Congénitos del Metabolismo (Spanish Association for the Study of Congenital Errors of Metabolism)
APS Arbeitsgemeinschaft für pädiatrische Stoffwechselstörungen (Working Group for Pediatric Metabolic Disorders)
ASIEM Australasian Society for Inborn Errors of Metabolism
BIMDG British Inherited Metabolic Diesases Group
Lung Foundation Australia Rare Lung Disease in Children
GARD Genetic and Rare Diseases Information Center
Lungenärzte im Netz – Seltene Lungenerkrankungen im Fokus (Focus on Rare Lung Diseases)
NORD National Organization for Rare Disorders
NZORD New Zealand Organization for Rare Disorders
ISNS International Society for Neonatal Screening
ECFS European Cystic Fibrosis Society
EURORDIS European Organization for Rare Diseases
ESGCT European Society for Gene and Cell Therapy
UMBRELLA SUPPORT GROUPS AND PATIENT INFORMATION
Disease Info Search Spin-off for information about diseases and related support and advocacy networks
Genetic Alliance Non-profit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders
ORPHANET The portal for rare diseases and orphan drugs
RareConnect Connecting rare disease patients globally
SHCA Specialized Healthcare Alliance
Genetic Conditions / rare conditions support groups
European Lung White Book on Rare and Orphan Lung Diseases
CROSS-BORDER HEALTHCARE INFORMATION
Organisation of cross-border healthcare in the EU
Information for patients on their rights to healthcare abroad
Information for patients on National Contact Points
European Cross-Border Cooperation on Health: Theory and Practice
EUROPEAN COMMISSION SITES
ERNs European Reference Networks
CHAFEA Consumers, Health and Food Executive Agency
DG-Santé Health and Food Safety
RESEARCH INFRASTRUCTURES AND DATABASES
Orphanet List of EU Rare Disease Research Infrastructures
US National Library of Medicine
International Statistical Classification of Diseases and Related Health Problems 10th Revision
HGMD Search (Human Gene Mutation Database Cardiff)
DRUGS
EMA European Medicines Agency
FDA Food and Drug Administration
IMI Innovative Medicines Initiative