You will find on the map and in the table below, the full list of rare epilepsies associations, along with their contact information.

For the map, click on the button on the left side to see the filters, so you can search by disease.

For the table, use the search bar if you are looking for a specific disease, or for all associations of one country, or per name. 

If you wish to be added to this list, feel free to contact EpiCARE Communication manager, Anne Robert.

For more information on the EpiCARE ePAGs, check out our webpage on the patient representatives.

Name of diseaseOrphanCodeRepresentativeNationalityFacebook PageWebsiteResponsableEmail
1p36 deletionORPHA:1606Spainhttps://www.facebook.com/delecion1p36/https://www.delecion1p36.es/info@delecion1p36.es
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Spainhttps://www.facebook.com/AHCSpain/www.aesha.orgBridget Vranckxinfo@aesha.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Francewww.afha.orgDominique Poncelincontact@afha.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHCFE - AHC Federation of EuropeEUhttps://www.facebook.com/ahcfe/http://www.ahcfe.euKatherine Behlinfo@ahcfe.eu
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC Association of IcelandIcelandhttps://www.ahc.is/frontpage/Sigurdur H Johannesson ahc@ahc.is
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC18+ e.V.Germanyhttps://www.facebook.com/Association-ahc18-606879759444135/https://www.ahc18plus.org/Marek Parowizahc18plus@gmail.com
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC UK - Alternating Hemiplegia of Childhood UKUKwww.facebook.com/supportahcukhttps://www.ahcuk.org/Katherine Behlsupport@ahcuk.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Polandwww.facebook.com/ahcpolandwww.stow.ahc-pl.orgIlona Skibi?ska-Mamzer ; Marek Parowizinfo@stow.ahc-pl.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC VERENIGING NEDERLANDNetherlandwww.facebook.com/AHCkidsNLwww.ahckids.nlWillem Zorgeinfo@ahckids.nl
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC Kids DenmarkDenmarkwww.ahckids.dkSuffia Madsensuffiam@gmail.com
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Alternating Hemiplegia of Childhood Ireland (AHCI)Irelandhttp://www.ahci.ie/info@ahci.ie
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Alternating Hemiplegia of Childhood BulgariaBulgariahttps://www.facebook.com/bulgaria.ahc/https://www.ahcbg.org/en/Anton Katsarovinfo@ahcbg.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98A.I.S.EA - A.I.S.EA Onlus - Associazione Italiana Emiplegia AlternanteItalywww.facebook.com/aiseaonluswww.aiseaonlus.orgPaola Bonainfo@aiseaonlus.org
IAHCRCItalyhttps://www.facebook.com/iahcrc/https://www.iahcrc.net/Rosaria info@iahcrc.net
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome AllianceEuropehttps://www.facebook.com/AngelmanSyndromeAlliance/https://angelmanalliance.org/index.php/contactBetty Willemseninfo@angelmanalliance.eu
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Associazione Angelman OnlusItalyhttps://www.facebook.com/Associazione-Angelman-264454530297881/www.associazioneangelman.itRoberta Martinelliassociazioneangelman@gmail.com
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Sindrome de AngelmanSpainhttps://www.facebook.com/asaangelman/?fref=tshttp://www.angelman-asa.orgJoseba Antxustegiinfo@angelman-asa.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Syndrome Angelman FranceFrancehttps://www.facebook.com/Syndrome.Angelman.France/?fref=tshttp://www.syndromeangelman-france.org/syndromeangelmanfrance@orange.fr
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Francehttps://www.facebook.com/syndrome.angelman.afsa/timeline/http://www.angelman-afsa.orgcontact@angelman-afsa.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5AngelPortugalhttps://www.facebook.com/AngelmanPT/http://www.angel.ptgeral@angel.pt
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Nina FoundationNethelandshttps://www.facebook.com/groups/377953913011/https://ninafoundation.eu/index.phpinfo@ninafoundation.eu
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman UKUKhttps://www.facebook.com/AngelmanUK/http://angelmanuk.orgsupport@angelmanuk.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome IrelandIrelandhttps://www.facebook.com/angelmansyndromeirelandhttp://www.angelman.ie/admin@angelman.ie
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman SyndroomBelgiumhttps://www.facebook.com/Angelmansyndroomhttps://www.angelmansyndroom.be/post@angelmansyndroom.be
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelamn Syndroom NetherlandNetherlandshttps://www.angelmansyndroom.nl/info@angelmansyndroom.nl
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Austriahttps://www.facebook.com/angelmanvereinhttp://www.angelman.at/forschung/Yvonne Otzelbergerinfo@angelman.at
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman UkraineUkrainehttps://www.facebook.com/genofond.future/https://www.genefund-future.com.ua/genofond.future@gmail.com
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Hungaryhttps://www.facebook.com/angelman.hu/http://angelman.hu/angelmanalapitvany@gmail.com
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5AsgentCzech Republichttps://www.facebook.com/asgent.orghttps://asgent.org/en/info@asgent.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman e.V.Germanyhttps://www.facebook.com/Angelman.Elternvereinhttps://angelman.de/Holger Muelleras-info@angelman.de
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5OrsaItalyhttps://www.facebook.com/sindromediangelman/?fref=tshttps://www.sindromediangelman.orgPrisco Tommasoinfo@sindromediangelman.org
CDKL5ORPHA:1934CDKL5 Insieme verso la curaItalyhttps://www.facebook.com/cdkl5insiemeversolacurahttp://www.cdkl5insiemeversolacura.itOmar Fumagalisoci.cdkl5@gmail.com
CDKL5ORPHA:1934Cure CDKL5UKhttps://www.facebook.com/CDKL5UKhttps://curecdkl5.org.uk/Carole Anneinfo@curecdkl5.org
CDKL5ORPHA:1934ASSOCIAZIONE CDKL5Italyhttp://www.cdkl5.org/Franceschetti Emanuelainfo@cdkl5.org
CDKL5ORPHA:1934CDKL5 Alliance FrancophoneFrancehttps://www.facebook.com/CDKL5.frhttp://cdkl5.frSarah MORISSEAUcontact@cdkl5.fr
CDKL5ORPHA:1934CDKL5 Deutschland e.V.Germanyhttps://www.facebook.com/CDKL5DeutschlandOesterreichSchweiz/https://www.cdkl5-verein.de/Patrick BAGERinfo@cdkl5-verein.de
CDKL5ORPHA:1934Spainhttps://www.facebook.com/profile.php?id=100063533475207https://aacdkl5.org/info@aacdkl5.org
CDKL5ORPHA:1934CDKL5 AustriaAustriahttps://www.facebook.com/cdkl5austria/http://cdkl5.atChristoph Gadermayrgademayr@immoadd.at
CDKL5ORPHA:1934CDKL5 IrelandIrelandhttps://www.facebook.com/cdkl5irl/cdkl5ireland@gmail.com
CDKL5ORPHA:1934CDKL5 NederlandNetherlandshttps://www.facebook.com/groups/555857924496537/http://www.cdkl5.nl/pam@cdkl5.nl
CDKL5ORPHA:1934CDKL5 SlovakiaSlovakiahttps://www.facebook.com/CDKL5Slovakiahttp://www.cdkl5.sk/info@cdkl5.sk,
CDKL5ORPHA:1934Loulou FoundationUKhttps://www.facebook.com/louloufoundationhttps://www.louloufoundation.org/contact@louloufoundation.org
CDKL5ORPHA:1934CDKL5 GeorgiaGeorgiahttps://www.facebook.com/CDKL5GEhttp://gsiem.gecdkl5georgia@gmail.com
CDKL5ORPHA:1934CDKL5 RussiaRussiahttps://www.facebook.com/groups/CDKL5Russia/aboutcdkl5russia@gmail.com
CDKL5ORPHA:1934CDKL5 PortugalPortugalhttps://www.facebook.com/cdkl5portugal/aboutjpvieira88@gmail.com
CDKL5ORPHA:1934Switzerlandhttps://www.facebook.com/cdkl5suissehttps://www.cdkl-5.ch/fr.shtmlPatric BENZkontakt@cdkl-5.ch
Cerebral cavernous malformation221061Francehttps://www.facebook.com/associationsurlescavernomescerebraux/http://association-cavernome-cerebral.e-monsite.com/Christian GRANDETcgrandet@orange.fr
Cerebral cavernous malformation221061Germanyhttps://www.facebook.com/angiodysplasiehttps://www.angiodysplasie.deinfo@angiodysplasie.de
Cerebral cavernous malformation221061ANACC Onlus - Associazione Nazionale Angioma Cavernoso CerebraleItalyhttps://www.facebook.com/AngiomaCavernosoCerebraleLaCommunityhttps://www.anaccaps.orgRita TREGLIApresidente@anacconlus.org
Cerebral cavernous malformation221061Spainhttps://www.facebook.com/cavernomashttps://cavernomas.org/info.cavernomas@gmail.com
Cerebral cavernous malformation221061Cavernous Angioma Sweden (CASE)Swedenhttps://www.facebook.com/CavernostAngiomSverige.CASEhttps://www.cavernostangiomsverige.org/Jana BERGHOLTZinfo@cavernostangiomsverigr.org
Cerebral cavernous malformation221061Cavernoma Alliance UKUKhttps://www.facebook.com/CavernomaAllianceUKhttps://cavernoma.org.uk/Lynn LADBROOKhello@cavernoma.org.uk
Cerebral cavernous malformation221061Cavernoma IrelandIrelandhttps://www.facebook.com/profile.php?id=100069352683815cavernomaireland@gmail.com
Cerebral cavernous malformation221061Cavernoma PortugalPortugalhttps://www.facebook.com/CavernomaPortugal/https://www.cavernomaportugal.ptinfo@cavernoma.pt
CLCN4-related X-linked intellectual disability syndromeCure CLCN4UKhttps://www.facebook.com/CureCLCN4/https://cureclcn4.org/info@cureclcn4.org
CSWSSORPHA:725Spainhttps://www.facebook.com/sindromePOCShttps://sindromepocs.org/que-es-el-pocs/info@sindromepocs.org
Dravet SyndromeORPHA: 33069Dravet Italia OnlusItalyhttps://www.facebook.com/DravetItaliaOnlus/http://www.dravet-italia.orgIsabella Brambilla
info@dravet-italia.org"
Dravet SyndromeORPHA: 33069Dravet Syndrome European FederationEuropehttps://www.facebook.com/draveteurope/http://dravet.euSimona Borroniinfo@dravet.eu
Dravet SyndromeORPHA: 33069Gruppo Famiglie DravetItalyhttps://www.facebook.com/GruppoFamiglieDravetOnlus/https://www.sindromedidravet.orgSimona Borronigruppofamiglie@sindromedidravet.org
Dravet SyndromeORPHA: 33069Stichting Dravetsyndroom Nederland VlaanderenNetherlandshttps://www.facebook.com/profile.php?id=100068743472932https://www.dravetsyndroom.eu/Myra De Grootinfo@dravetsyndroom.eu
Dravet SyndromeORPHA: 33069Alliance Syndrome de DravetFrancehttps://www.facebook.com/alliancesyndromededravethttps://www.dravet.frAnne Sophie Halletcontact@dravet.fr
Dravet SyndromeORPHA: 33069Swiss Dravet Syndrome AssociationSwitzerlandhttps://www.facebook.com/dravetchhttps://dravet.ch/der-wegweiser-ist-daRenata Heusserinfo@dravet.ch
Dravet SyndromeORPHA: 33069DRAVET-SYNDROM e.V.Germanyhttps://www.facebook.com/dravet.de/https://dravet.de/Nicole Lamlainfo@dravet.de
Dravet SyndromeORPHA: 33069Dravet sindrom HrvatskaCroatiahttps://www.facebook.com/DSHrvatska/?tn-str=k*Fhttps://dravet-sindrom-hrvatska.hr/Irena Bibicinfo@dravet-sindrom-hrvatska.hr
Dravet SyndromeORPHA: 33069Dravet syndrome UKUKhttps://www.facebook.com/dravetsyndromeuk/https://www.dravet.org.uk/Galia Wilsoninfo@dravet.org.uk
Dravet SyndromeORPHA: 33069Portugalhttps://www.facebook.com/dravetportugal/https://dravet.pt/Sara Pratesgeral@dravet.pt
Dravet SyndromeORPHA: 33069Dravet.plPolandhttps://www.facebook.com/zespol.dravet/http://www.dravet.pldravet@dravet.pl
Dravet SyndromeORPHA: 33069DRAVET Syndrome Association SwedenSwedenhttps://www.dravetssweden.se/Jennie Bergmaninfo@dravetssweden.se
Dravet SyndromeORPHA: 33069Spainhttps://www.facebook.com/Fundacion.Sindrome.de.Dravet/https://dravetfoundation.eu/informacion@dravetfoundation.eu
Dravet SyndromeORPHA: 33069Epilepsiforbundet Dravet syndrom Norwayhttps://www.facebook.com/dravet.nohttp://dravet.no/Susanne Loylanddravet@epilepsi.no
Dravet SyndromeORPHA: 33069Apoyo DravetSpainhttps://www.facebook.com/apoyodravet/http://www.apoyodravet.eu/Luisimi Arascontacto@apoyodravet.eu
Dravet SyndromeORPHA: 33069Dravet sindrom SrbijaSerbiahttps://www.facebook.com/dravetsindromsrbija/Irena Letmanji Chiforirenachifor@gmail.com
Dravet SyndromeORPHA: 33069Dravet DenmarkDenmarkhttps://www.facebook.com/dravetdk/https://dravet.dkpostkasse@dravet.dk
Dravet SyndromeORPHA: 33069Dravet syndrome IrelandIrelandhttps://www.facebook.com/dravetsyndromeireland/https://www.dravetsyndromeireland.org/info@dravetsyndromeireland.org
EncephalitisORPHA:97275Encephalitis SocietyUKhttps://www.facebook.com/EncephalitisSociety/www.encephalitis.infomail@encephalitis.info
FOXG1 syndormeORPHA:561854FoxG1 Deutschland e.V.Germanyhttps://www.facebook.com/foxg1dehttps://www.foxg1.de/info@foxg1.de
FOXG1 syndormeORPHA:561854association FOXG1 FranceFrancehttps://www.facebook.com/FOXG1France/https://foxg1france.fr/contact@foxg1france.fr
ORPHA:592564GNAO1 tuki ryFinlandhttp://www.gnao1.fi/info@gnao1.fi
ORPHA:592564Famiglie GNAO1 Italyhttps://www.facebook.com/FamiglieGNAO1/https://gnao1.it/info@gnao1.it
ORPHA:592564Stichting GNAO1 NLNetherlandshttps://www.facebook.com/StichtingGNAO1NLhttps://gnao1.nl/info@gnao1.nl
ORPHA:592564Spainhttp://gnao1.es/asociaciongnao1@gmail.com
ORPHA:592564Mondo GNAO1 UKUKhttps://www.facebook.com/mondognao1uk/https://mondo-uk.co.uk/Emma MARKSinfo@mondo-uk.co.uk
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Associazione Italiana GLUT1Italyhttps://www.facebook.com/associazioneitalianaglut1/https://www.glut1.itMONICA LUCENTE Presidente e RAPPRESENTANTE EPAG EPICARE
Camerini Alessandra"famiglie@glut1.it
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Francehttps://asdglut1.wixsite.com/asdglut1Magali SORRETasdglut1@gmail.com
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Germanyhttp://glut1.de/de.htmlinfo@glut1.de
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Glut1 Deficiency UK - Irish Contact PointIrelandhello@glut1deficiency.org.uk
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Foreningen for GLUT1 dsNorwayhttps://www.facebook.com/groups/228127133942975/?ref=bookmarkshttps://www.glut1ds.no/John RIVELSRUDpost@glut1ds.no
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Spainhttps://www.facebook.com/aglutinateGLUT1/https://aglutinate.org/info@aglutinate.org
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Spainhttps://asglutdiece.org/info@asglutdiece.org
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277GLUT 1 Deficiency UKUKhttps://www.facebook.com/Glut1DeficiencyUK/https://glut1deficiency.org.uk/hello@glut1deficiency.org.uk
Hypothalamic HamartomaORPHA:86906Hope for Hypothalamic HamartomasUKhttps://www.facebook.com/hopeforhhukwww.hopeforhh.orgEmma Nottinfouk@hopeforhh.org
KCNq2ORPHA:439218KCNQ2 France DeveloppementFrancehttps://www.facebook.com/kcnq2France/Sabrina HAMOTkcnq2francedev@gmail.com
KCNq2ORPHA:439218Spainhttps://www.facebook.com/Kcnq2/https://kcnq2espana.com/Tanit DE BENITO TRENASkcnq2spain@gmail.com
KCNq2ORPHA:439218KCNQ2 e.V.Germanyhttps://www.facebook.com/KCNQ2-eV-222465818324480https://kcnq2.de/info@kcnq2.de
KCNq2ORPHA:439218European KCNQ2 AssociationEUhttps://www.europeankcnq2association.comeuropeankcnq2association@gmail.com
Lennox Gastaut syndromeORPHA:2382Associazione Famiglie LGS ItaliaItalyhttps://www.facebook.com/LGSITALIA/https://www.associazionelgs.itKatia Santoroinfo@associazionelgs.it
LissencephalyORPHA:95232Germanyhttps://www.facebook.com/Lissevkontakt/https://lissenzephalie.de/Burkhard PROPFkontakt@lissenzephalie.de
LKSORPHA:98818Spainhttps://www.facebook.com/landaukleffner/slkpenelope@gmail.com
LKSORPHA:98818FOLKSUKhttps://www.facebook.com/FamiliesOfLandauKleffnerSyndromeinfo@friendsoflks.com
Migrating partial seizures of infancySpainhttps://www.facebook.com/sindromePOCShttps://sindromepocs.org/que-es-el-pocs/info@sindromepocs.org
Mitochondrial DiseasesORPHA:2598Association contre les Maladies MitochondrialesFrancehttps://www.facebook.com/association.ammi/?ref=page_internalhttps://www.association-ammi.org/assoammi@gmail.com
PCDH19ORPHA:101039Insieme per la ricerca PCDH19 - OnlusItaliahttps://www.facebook.com/insiemepcdh19/http://www.pcdh19research.orgFrancesca Squillante - Fabrizio Mistrettainsiemepcdh19@yahoo.it
PCDH19ORPHA:101039PCDH19 FranceFrancehttps://www.facebook.com/pcdh19francehttps://pcdh19france.fr/pcdh19france@gmail.com
PCDH19ORPHA:101039Spainhttps://www.facebook.com/profile.php?id=100064857304148
Rett syndrome (MECP2)ORPHA:778Rett Syndrome EuropeEuropehttps://www.facebook.com/Rett-Syndrome-Europe-232940826831244/timelinehttp://www.rettsyndrome.euinfo@rettsyndrome.eu
Rett syndrome (MECP2)ORPHA:778Associazione per la Ricerca sulla Sindrome di Rett - ONLUSItalyhttps://www.facebook.com/prorettricerca/https://prorett.orgRita Bernardellisegreteria@prorett.org
Rett syndrome (MECP2)ORPHA:778AIRETT - ASSOCIAZIONE ITALIANA SINDROME DI RETTItalyhttps://www.airett.itLucia Dovigodirettivo@airett.it
Rett syndrome (MECP2)ORPHA:778Portugalhttps://www.facebook.com/ANPAR.SindromeRett.Portugal/https://www.anpar.pt/Sandra Madeiraanparett@gmail.com
Rett syndrome (MECP2)ORPHA:778Spainhttps://www.facebook.com/rett.spainhttp://www.rett.es/info@rett.es
Rett syndrome (MECP2)ORPHA:778Spainhttps://www.facebook.com/RettCat/https://rett.cat/secretaria.rett@gmail.com
Rett syndrome (MECP2)ORPHA:778Francehttps://www.facebook.com/AFSRett/http://www.afsr.fr/contact@afsr.fr
Rett syndrome (MECP2)ORPHA:778Belgische Rett Syndroom Vereniging v.z.wBelgiumhttp://www.rettsyndrome.be/brsv@rettsyndrome.be
Rett syndrome (MECP2)ORPHA:778Nederlandse Rett Syndroom VerenigingNetherlandshttps://www.facebook.com/RettSyndroomNLhttp://www.rett.nl/info@rett.nl
Rett syndrome (MECP2)ORPHA:778Rett UKUKhttps://www.facebook.com/RettUK/http://www.rettuk.org/info@rettuk.org
Rett syndrome (MECP2)ORPHA:778Reverse RettUKhttps://www.facebook.com/reverserett/http://reverserett.org.uk/info@reverserett.org.uk
Rett syndrome (MECP2)ORPHA:778The Rett Syndrome Association of IrelandIrelandhttps://www.facebook.com/RettSyndromeIrelandhttp://www.rettsyndrome.ie/info@rettsyndrome.ie
Rett syndrome (MECP2)ORPHA:778Icelandhttp://www.rettenglar.yolasite.com/ff@liu.is
Rett syndrome (MECP2)ORPHA:778Syndrome de Rett: LuxembourgLuxembourgNina Kocanninakocan@hotmail.com
Rett syndrome (MECP2)ORPHA:778Norsk Forening for Rett SyndromNorwayhttp://www.rettsyndrom.no/Hilde Friispost@rettsyndrom.no
Rett syndrome (MECP2)ORPHA:778RSIS (Rett Syndrom i Sverige)Swedenhttp://www.rsis.se/info@rsis.se
Rett syndrome (MECP2)ORPHA:778Rett ryFinlandhttps://www.facebook.com/profile.php?id=100064379542013https://rettfinland.fi/Kirsi Peltonenkirsi.peltonen@rettfinland.fi
Rett syndrome (MECP2)ORPHA:778Landsforeningen Rett SyndromDenmarkhttp://www.rett.dk/Martin Jagd Nielsenrett@rett.dk
Rett syndrome (MECP2)ORPHA:778Germanyhttps://www.facebook.com/RettSyndromHilfehttp://www.rett.de/info@rett.de
Rett syndrome (MECP2)ORPHA:778Interessen-Gruppe Rett-Syndrom SchweizSwitzerlandhttps://www.facebook.com/rettvereinschweizhttp://www.rett.ch/Tony & Joanna Snyderinfo@rett.ch
Rett syndrome (MECP2)ORPHA:778Austriahttps://www.facebook.com/RettSyndromAustria/http://www.rett-syndrom.at/kontakt@rett-syndrom.at
Rett syndrome (MECP2)ORPHA:778Polandhttps://www.facebook.com/zespol.retta/?fref=tshttp://www.rettsyndrome.pl/Pawe? Kwiecie?info@rettsyndrome.pl
Rett syndrome (MECP2)ORPHA:778Czech Republichttps://www.facebook.com/Rett-Community-219730424732417/timeline/http://www.rett-cz.com/info@rett-cz.com
Rett syndrome (MECP2)ORPHA:778Slovakiarettsyndrome.sk@gmail.com
Rett syndrome (MECP2)ORPHA:778SerbiaMaja Pavlovickajaprda@yahoo.com
Rett syndrome (MECP2)ORPHA:778RETT ?????Greecehttps://www.facebook.com/profile.php?id=100064325754093http://www.rettgreece.gr/Nektaria Vazouraaggeloi_ghs@hotmail.com
Rett syndrome (MECP2)ORPHA:778MaltaDenis Galeadgalea@tcsmith.com
Rett syndrome (MECP2)ORPHA:778CyprusPetros Konstantinoubob20v@cytanet.com.cy
Rett syndrome (MECP2)ORPHA:778BulgariaIva Gogovaiva_66@mail.bg
Rett syndrome (MECP2)ORPHA:778MontenegroSasa & Sanja Vuksanovicsasa.vuksanovic.pg@gmail.com
Rett syndrome (MECP2)ORPHA:778North MacedoniaBiljana Vlastimirovabibizare@gmail.com
Rett syndrome (MECP2)ORPHA:778Hungaryhttps://www.facebook.com/rettalapitvany/http://www.rettszindroma.hu/Danijela Szilirettszindromaalapitvany@gmail.com
Rett syndrome (MECP2)ORPHA:778MoldovaLosetchi Doinita-Elenadoinita-elena@mail.ru
Rett syndrome (MECP2)ORPHA:778UkraineElena Khatinakhatinaev1@gmail.com
Rett syndrome (MECP2)ORPHA:778Agotos labdaros ir paramos fondasLithuaniahttps://www.facebook.com/agotos.lt/http://www.agotos.lt/Laura Kanapienieneinfo@agotos.lt
Rett syndrome (MECP2)ORPHA:778LatviaInese Belickainese.belicka@inbox.lv
Rett syndrome (MECP2)ORPHA:778Estonia
Rett syndrome (MECP2)ORPHA:778BelarusJulia Anashechkinayulianna081982@mail.ru
Rett syndrome (MECP2)ORPHA:778?????????? ???????? ?????Russiahttp://www.rettsyndrome.ru/Olga Timutsarettsyndrome@mail.ru
Ring Chromosome 14ORPHA:1440Ring 14 InternationalEuropehttp://www.ring14.org/eng/250/home/dewoody.yssa@ring14.org
Ring Chromosome 14ORPHA:1440Ring14 Italia OnlusItaliahttps://www.facebook.com/groups/ring14/http://www.ring14.org/ita/Stefania Azzaliinfo@ring14.it
Ring Chromosome 14ORPHA:1440Ring14 - SpainSpainhttps://www.facebook.com/groups/ring14/http://www.ring14.org/es/Eva Marinmarin.eva@ring14.es
Ring Chromosome 14ORPHA:1440Ring14 - NetherlandsNetherlandshttps://www.facebook.com/groups/ring14/http://www.ring14.org/nl/Shutte Janshutte.jan@ring14.nl
Ring Chromosome 14ORPHA:1440Ring14 - FranceFrancehttps://www.facebook.com/groups/ring14/http://www.ring14.org/fr/Ingrid Deguisnedeguisne.ingrid@ring14.fr
Ring Chromosome 14ORPHA:1440Ring14 - BelgiumBelgiumhttps://www.facebook.com/groups/ring14/Cindy Desssyring14belgium@gmail.com
Ring Chromosome 20ORPHA:1444Allison WatsonUKhttps://www.facebook.com/Ring20ResearchandSupportUKhttp://ring20researchsupport.co.uk/Allison Watsonring20@ring20researchsupport.co.uk
Ring Chromosome 20ORPHA:1444Paziente Contatto isabellaItalia
SCN2ASCN2A EuropeEuropehttps://www.scn2a.eu/scn2a@web.de
SCN2ASCN2A Famiglie in retteItalyhttps://www.facebook.com/SCN2AItaliahttps://scn2a-italia.it/Stefania Dantoneinfo@scn2a-italia.it
SCN2ASCN2A UKUKhttps://www.facebook.com/scn2auk/info@scn2afamiliesuk.co.uk
SCN2ASCN2A GeorgiaGeorgiahttps://www.facebook.com/profile.php?id=100069329701001&fref=tag
SCN8AORPHA:442835SCN8A ItaliaItalyhttps://www.facebook.com/scn8aitaliahttps://www.scn8a.it/#info@scn8a.it
SCN8AORPHA:442835SCN8A EuropeEuropehttps://www.facebook.com/scn8aeuropesupportgroup@thecutesyndrome.com
SCN8AORPHA:442835SCN8A UK&IrelandUK, Irelandhttps://www.facebook.com/profile.php?id=100068115247244https://www.scn8a.co.ukSCN8A.ukie@gmail.com
SCN8AORPHA:442835SCN8A FranceFrancehttps://www.facebook.com/profile.php?id=100079767607858https://www.scn8a.fr/scn8a.france@gmail.com
SCN8AORPHA:442835SCN8A PortugalPortugalhttps://www.facebook.com/SCN8APortugal/scn8a.portugal@gmail.com
SLC13A5Tess Research FoundationUSA (global)https://www.facebook.com/TESSresearch/https://www.tessresearch.org/Maria Geslininfo@tessfoundation.org
Sturge-Weber syndromeORPHA:3205Francehttps://www.facebook.com/Juliaetlesyndromesturgeweber/https://www.vanille-fraise.org/association@vanille-fraise.org
Sturge-Weber syndromeORPHA:3205Interessengemeinschaft Sturge-Weber-Syndrom e.V.Germanyhttps://www.facebook.com/profile.php?id=100063822548109https://www.sturge-weber.de/Daniela HITZLERinfo@sturge-weber.de
Sturge-Weber syndromeORPHA:3205NvWSWs - Nederlandse vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroomNetherlandshttps://www.facebook.com/NvWSWshttps://www.wijnvlek-sturgeweber.nl/info@wijnvlek-sturgeweber.nl
Sturge-Weber syndromeORPHA:3205Spainhttps://www.facebook.com/AESSW/info@sturge-weber.es
Sturge-Weber syndromeORPHA:3205Sturge-Weber association Sweden (SWS)Swedenhttp://www.sturge-weber.se/joacim.stahl@sturge-weber.se
Sturge-Weber syndromeORPHA:3205Sturge Weber Foundation UKUKhttps://www.facebook.com/SWUKFanPage/https://www.sturgeweber.org.uk/support@sturgeweber.org.uk
Sturge-Weber syndromeORPHA:3205Sturge Weber ItaliaItalyhttps://www.facebook.com/Sindrome-di-Sturge-Weber-Italia-502358313141069/http://www.sturgeweberitalia.orgGhiotto Gianlucainfo@sturgeweberitalia.org
STXBP1-related encephalopathyORPHA:599373Spainhttps://www.facebook.com/stxbp1https://stxbp1.es/en/info@stxbp1.es
SYNGAP1 - synaptic Ras GTPase activating protein 1Syngap Elternhilfe e.V.Germanyhttps://www.facebook.com/groups/605937599747915/http://www.syngap.de/Verena SCHMEDERkontakt@syngap.de
SYNGAP1 - synaptic Ras GTPase activating protein 1Bridgesyngap (SYNGAP1 support Group)- Irish Contact PointIrelandsyngap1roi@gmail.com
SYNGAP1 - synaptic Ras GTPase activating protein 1Spainhttps://www.facebook.com/profile.php?id=100081547130803https://xn--syngap1espaa-khb.es/Gonzalo BERMEJO MODINOinfo@syngap1.es
SYNGAP1 - synaptic Ras GTPase activating protein 1SYNGAP1 ItaliaItalyhttps://www.facebook.com/syngap1italiahttps://www.syngap1.it/afsy1.italia@gmail.com
SYNGAP1 - synaptic Ras GTPase activating protein 1SYNGAP1 UKUKhttps://syngapuk.org/
SYNGAP1 - synaptic Ras GTPase activating protein 1SYNGAP1 PortugalPortugalhttps://www.facebook.com/profile.php?id=100068049530734syngap1portugal@gmail.com
SYNGAP1 - synaptic Ras GTPase activating protein 1HungaryJoszef Tothjozseftoth39@gmail.com
Tuberous sclerosisORPHA:805TSA- Tuberous sclerosis associationUKhttps://www.facebook.com/thetsaukhttp://www.tuberous-sclerosis.orgAlison Cooper (Head of research), Jayne Spink (CEO)admin@tuberous-sclerosis.org
Tuberous sclerosisORPHA:805Francehttps://www.facebook.com/ASTB2015https://astb.asso.fr/contact@astb.asso.fr
Tuberous sclerosisORPHA:805Esclerosis Tuberosa BarcelonaSpainhttps://www.facebook.com/Esclerosis-tuberosa-barcelona-106722256065406/https://esclerosistuberosa.wordpress.com
Tuberous sclerosisORPHA:805Germanyhttps://www.facebook.com/TSDeV.org/https://www.tsdev.orginfo@tsdev.org
Tuberous sclerosisORPHA:805Associazione Sclerosi TuberosaItalyhttps://www.facebook.com/groups/360361414135616/http://www.sclerosituberosa.org/home/info@sclerosituberosa.org
Tuberous sclerosisORPHA:805Austriahttp://www.tuberoesesklerose.at/info@tuberoesesklerose.at
Tuberous sclerosisORPHA:805Belgiumhttps://www.betsc.be/fr/info@betsc.be
Tuberous sclerosisORPHA:805Denmarkhttps://www.facebook.com/groups/211655862240218/?fref=tshttp://tsdanmark.dk/formand@tsdanmark.dk
Tuberous sclerosisORPHA:805TSC IrelandIrelandhttps://www.facebook.com/TSCIreland/https://tscireland.org/info@tscireland.org
Tuberous sclerosisORPHA:805Tuberous Sclerosis FoundationNetherlandshttps://www.facebook.com/levenmetTSC/https://stsn.nl/info@stsn.nl
Tuberous sclerosisORPHA:805Norwayhttps://www.nfts.no/post@nfts.no
Tuberous sclerosisORPHA:805Stowarzyszenie Chorych Na Stwardnienie GuzowatePolandhttps://www.stwardnienie-guzowate.eu/stowarzyszenie.stw.guz@wp.pl
Tuberous sclerosisORPHA:805A.E.T.N.Portugalhttps://www.facebook.com/esclerosetuberosa/https://www.esclerosetuberosa.org.pt/homeinfo@esclerosetuberosa.org.pt
Tuberous sclerosisORPHA:805Slovakiahttps://www.facebook.com/astus.sk/https://www.diagnozatsc.sk/astus@astus.sk
Tuberous sclerosisORPHA:805Spainhttps://www.facebook.com/asociacionespanoladeesclerosistuberosa/http://esclerosistuberosa.org/info@esclerosistuberosa.org
Tuberous sclerosisORPHA:805TSC ServigeSwedenhttps://www.facebook.com/tscsverige/https://tsc-sverige.se/info@tsc-sverige.se
Tuberous sclerosisORPHA:805The All-Ukrainian Association for the Care of Tuberous SclerosisUkrainehttps://www.facebook.com/groups/www.tuberoussclerosis.com.ua/http://www.tuberoussclerosis.com.ua/tscukraine@gmail.com
Tuberous sclerosisORPHA:805Hungarian Foundation for Tuberous SclerosisHungaryhttps://www.facebook.com/sclerosistuberosa/https://www.tsc.hu/info@tsc.hu
Tuberous sclerosisORPHA:805?????????? ??????? ?????????? ?????????Russiatsc.rus@gmail.com
West syndromeORPHA:3451Spainhttps://www.facebook.com/fundacionsindromedewest/http://www.sindromedewest.org/fundacion@sindromedewest.org
West syndromeORPHA:3451UK Infantile Spasms Trust- UKISTUKhttps://www.facebook.com/UKInfantileSpasmsTrust/https://ukinfantilespasmstrust.org/ukinfantilespasmstrust@gmail.com
West syndromeORPHA:3451ASSOCIATION DE PARENTS CONCERNES PAR LE SYNDROME DE WESTFrancehttp://sudwest.free.fr/Lucienne LEROYsudwest@free.fr
West syndromeORPHA:3451LES ENFANTS DE WESTFrancehttps://www.facebook.com/groups/52683715391/https://famwest.hypotheses.org/les-enfants-de-west-2Emilie GIRARDenfantsdewest@hotmail.fr
Epilepsy sparksUKhttps://www.facebook.com/epilepsysparks/https://www.epilepsysparks.com/Torie Robinsoninfo@epilepsysparks.com
EPISTOP, Czech RebublicSarka Kanova
Barbara Nicolbarbaranicol170@hotmail.com
KCNT1KCNT1 / NLNetherlandsAnita Noordhoff
FIRESAssociation ParatonnerreFrancehttps://www.facebook.com/AssociationParatonnerre/https://associationparatonnerre.orgAssociation Paratonnerreassociationparatonnerre@yahoo.fr
Ketogenic dietUKhttps://www.facebook.com/matthewsfriends/https://www.matthewsfriends.org/Emma Williamsenq@matthewsfriends.org
JudetteMarie Emmery
KCNT1Une Etincelle Pour IsaureFrancehttps://uneetincellepourisaure.com/Henry Thelucontact@uneetincellepourisaure.com
KCNT1Valeria AssociationSwitzerlandhttps://www.facebook.com/rettevaleria/https://www.valeria-association.com/en/support@valerias.org
Kinder Epilepsiewww.kinderepilepsie.beStefanie De Jongheinfo@kinderepilepsie.be
GRIN2BEuropean GRIN2B Association EUhttps://www.facebook.com/grin2beurope/http://grin2b.eu/Christian Branderadmin@grin2b.eu
GRIN2BSpainhttps://www.facebook.com/GRINpatia/https://www.grinpatias.org/quienes-somosSandra Silva Arrietainfo@grinpatias.org
GRIN2BEuropean GRIN2B Association EUMarita gunn Sandnesmarita@grin2beu.com
GRIN2BStichting GRIN syndroomNetherlandshttps://www.facebook.com/groups/202306564791124https://grinsyndroom.nl/Gilianneinfo@grinsyndroom.nl
GRIN2BEuropean GRIN2B Association EUAmela Topicdizzic83@gmail.com
GRIN2AGrin2A ItaliaItalyhttps://www.instagram.com/mauriziogrin2aitalia/?hl=ithttps://assmgrin2aitalia.it/info@assmgrin2aitalia.it
General Epilepsy AssociationsEpilepsy ActionUKhttps://www.facebook.com/epilepsyaction/https://www.epilepsy.org.uk/epilepsy@epilepsy.org.uk
General Epilepsy AssociationsEpilepsy SocietyUKhttps://www.facebook.com/EpilepsySociety/https://www.epilepsysociety.org.uk/helpline@epilepsysociety.org.uk
General Epilepsy AssociationsEpilepsy ScotlandUKhttps://www.facebook.com/epilepsyscotland/https://www.epilepsyscotland.org.uk/admin@epilepsyscotland.org.uk
Young EpilepsyYoung EpilepsyUKhttps://www.facebook.com/YoungEpilepsy/www.youngepilepsy.org.ukNicole Ronson Allaloufinfo@youngepilepsy.org.uk
Down syndrome related epilepsyEuropean Down syndrome associationEuropehttps://www.facebook.com/edsachannel/http://www.edsa.eu/down-syndrome/info@edsa.eu
Fragile X related epilepsyEuropean FRAGILE X NetworkEuropehttps://www.facebook.com/EuropeanFragileXNetworkhttps://fragilex.eu/
Progressive Myoclonic EpilepsiesAMARMYUL - Association contre la maladie rare myoclonique d'Unverricht-LundborgFrancehttp://www.amarmyul.com/index.phpamarmyul@wanadoo.fr
CavernomaEuropean Cavernoma AllianceEuropehttps://www.facebook.com/EuropeanCavernomaAlliance/https://sites.google.com/cavernostangiomsverige.org/eca/home?pli=1
Neurotransmiter diseasesSpainhttps://www.facebook.com/asoc.deneu/https://www.deneu.org/info@deneu.org
Brain injuryHeadwayUKhttps://www.facebook.com/headwayukhttps://www.headway.org.uk/enquiries@headway.org.uk
Metabolic diseases incluing ones that cause epilepsyAssociation of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"Cyprushttps://www.aspidazois.com/en/info@aspidazois.com

For more information on rare diseases and rare epilepsies associations and support, check out EURORDIS.