Tenglar á erlend samtök og aðra rannsóknaraðila
Tenglar á stofnanir og tengslanet í útlöndum
Rarelink.is, tengslanet milli Norðurlanda um sjaldgæfa sjúkdóma
Sjældne handicap, Servicestyrelsen, Danmark
Center for Sjældne Sygdomme, Aarhus Universitets Hospital
Klinik for Sjældne Handicap, Rigshospitalet Köbenhavn
EU Committee of Experts on Rare Diseases
New Zealand Organization for Rare Disorders
Office of Rare Diseases Research
Tenglar á önnur samtök í útlöndum
Rett Syndrome Research Trust UK
Landsforeningen Rett Syndrom, Danmark
Norsk Forening for Rett Syndrom
International Rett Syndrome Foundation, USA