Keywords Rare diseases · Clinical research networks · Epidemiology · Information systems · Training · Patient organizations. S.C. Groft (B) Office of Rare Diseases Research, National Institutes of Health, Bethesda, MD 20892-7518, USA e-mail: sg18b@nih.gov. M. Posada de la Paz, S.C. Groft (eds.), Rare Diseases Epidemiology, Advances 3.