De volgende patiëntenverenigingen zijn bij ons bekend:
Finland
Finnish Society for Cleft Patients, SUHUPO
Duitsland
EAS (Elterninitiative Apert Syndrom); www.apert-syndrom.de
Italie
Ti racconto un sorriso
Affrontiamo insieme la Sindrome di Crouzon e Apert
L.P.S. lavoriamo per un sorriso
Associazione Acondroplasia; www.aisac.it
Associazione Italiana CRAniostenosi (AICRA) www.aicra.it
Beckwith Wiedeman Syndrome Association : AIBWS Onlus.www.aibws.org
Gruppo Italiano Sindrome Di Goldenhar; www.goldenhar.it
Associazione Italiana Sindrome Kabuki ONLUS; www.facebook.com/aiskonlus
Nederland
LAPOSA; www.laposa.nl
Spanje
APERT cras
FEDER
AFILAPA - Asociación de Afectados de Fisura Labio-Palatina
Zweden
Rare diseases Sweden Elisabeth Wallenius
Kraniofacial patient society
Apert patient society
Verenigd Koninkrijk
Headlines; www.headlines.org.uk
CLAPA
Frankrijk
Association Francaise des Dysplasies Ectodermiques (AFDE); www.afde.net
Association Microphthalmie France; www.asso-micropthalmie.org
Generation 22; www.generation22.fr
TREMPLIN; www.tremplin-spr.org
AFIF SSR/PAG; www.silver-russell.fr
AFD Costello/CFC; afd-costellos-cfc.asso.fr
ARAD; www.netcoline.org
EPI'TETES; www.association-epitetes.fr
Association Kabuki syndrome; www.syndromekabuki.fr
L'enfant du miroir
Hypophosphatasie; wo.hypophosphatasie.com
Les P'tits Courageux; www.leptitscourageux.net
Syndrome Moebius France; www. moebius-france.org
Association CHARGE; www.associationchaus.