Patient involvement

The involvement of patients is paramount for the European Reference Networks. A collaboration exist with EURORDIS, which is specifically represented through ePAG. Besides members from ePAG, representatives from national patient societies from member states are also invited to join the CRANIO network. 

Finland

The Finnish Society for Cleft Patients, SUHUPO

 

Germany

EAS (Elterninitiative Apert Syndrom); www.apert-syndrom.de

 

Italy

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

 

Netherlands

LAPOSA;  www.laposa.nl

  

Spain

APERT cras           

FEDER       

AFILAPA - Asociación de Afectados de Fisura Labio-Palatina

  

Sweden

Rare diseases Sweden   Elisabeth Wallenius             

Kraniofacial patient society                                              

Apert patient society                                                                    

 

UK

Headlines; www.headlines.org.uk

CLAPA  

 

France

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.associationcharge.fr