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Rare epilepsies associations

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, Laura Roig.

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

Name of diseaseOrphacodeRepresentativeNationalityWebsiteFacebook PageEmail
1p36 deletionORPHA:1606Asociacion de Afectados de Delecion 1p36Spainhttps://www.delecion1p36.es/https://www.facebook.com/delecion1p36/info@delecion1p36.es
22q11ORPHA:567Relais 22 asblBelgiumhttp://www.relais22.be/https://www.facebook.com/relais22asbltresorerie@relais22.be
22q11ORPHA:261330VercafaBelgiumhttps://www.vecarfa.be/info@vecarfa.be
22q11ORPHA:56722Q11 DanmarkDenmarkhttps://www.22q11.dk/formand@22q11.dk
22q11ORPHA:567, ORPHA:172722Q11 EuropeEuropehttps://22q11europe.org/https://www.facebook.com/22q11europeancongresscommunication@22q11europe.org
22q11ORPHA:567, ORPHA:172722q11 Finland ryFinlandhttps://www.22q11finland.fi/https://www.facebook.com/22q11Finland/info@22q11finland.fi
22q11ORPHA:567GENERATION 22Francehttp://www.generation22.fr/https://www.facebook.com/generation22.22q11.2
22q11ORPHA:567, ORPHA:1727Wir sind 22Q e.V.Germanyhttp://www.wirsind22q.de/https://www.facebook.com/KiDS22q11Info@kids-22q11.de
22q11ORPHA:56722q11 IrelandIrelandhttps://www.22q11ireland.org/https://www.facebook.com/22q11irelandtech.22q11ireland@gmail.com
22q11ORPHA:261330AIdel22Italyhttps://aidel22.it/https://www.facebook.com/profile.php?id=100065000102033segreteria@aidel22.it
22q11ORPHA:567Stichting Steun 22q11Nethelandshttps://www.steun22q11.nl/info@steun22Q11.nl
22q11ORPHA:567, ORPHA:172722q11 PolskaPolandhttps://www.22q11.pl/kontakt@22q11.pl
22q11ORPHA:567Asociacion Sindrome 22q11Spainhttps://www.22q.es/https://www.facebook.com/22q.esinfo@22q.es
22q11ORPHA:567Foreningen 22q11Swedenhttps://www.22q11.se/r-marie@telia.com
22q11ORPHA:261330Connect22Switzerlandhttps://connect22.ch/laurent.gremaud@connect22.ch
22q11ORPHA:567Max AppealUKhttps://www.maxappeal.org.uk/https://www.facebook.com/MaxAppealUKinfo@maxappeal.org.uk
8p inverted duplication/deletion syndromeORPHA:96092La Maison 8pFrancehttps://lamaison8p.comhttps://www.facebook.com/LaMaison8plamaison8p@gmail.com
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Alternating Hemiplegia of Childhood BulgariaBulgariahttps://www.ahcbg.org/en/https://www.facebook.com/bulgaria.ahc/info@ahcbg.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC Kids DenmarkDenmarkwww.ahckids.dkhttps://www.facebook.com/AHCkids.dksuffiam@gmail.com
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHCFE - AHC Federation of EuropeEuropehttp://www.ahcfe.euhttps://www.facebook.com/ahcfe/info@ahcfe.eu
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Association Francaise de l'Hemiplegie Alternante-AFHAFrancewww.afha.orghttps://www.facebook.com/profile.php?id=100064389801532contact@afha.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC18+e.V.Germanyhttps://www.ahc18plus.org/https://www.facebook.com/Association-ahc18-606879759444135/ahc18plus@gmail.com
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC-DEUTSCHLAND E.V.Germanyhttps://ahc-kids.de/
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98IAHCRCWorldhttps://www.iahcrc.net/https://www.facebook.com/iahcrc/info@iahcrc.net
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC Association of IcelandIcelandhttps://www.ahc.is/frontpage/ ahc@ahc.is
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: G98A.I.S.EA - A.I.S.EA Onlus - Associazione Italiana Emiplegia AlternanteItalywww.aiseaonlus.orgwww.facebook.com/aiseaonlusinfo@aiseaonlus.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC VERENIGING NEDERLANDNetherlandwww.ahckids.nlwww.facebook.com/AHCkidsNLinfo@ahckids.nl
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Polskie Stowarzyszenie na Rzecz Osob z AHCPolandwww.stow.ahc-pl.orgwww.facebook.com/ahcpolandinfo@stow.ahc-pl.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98A.E.S.H.A. - Asociacion Espanola del Sindrome de la Hemiplejia AlternanteSpainwww.aesha.orghttps://www.facebook.com/AHCSpain/info@aesha.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98AHC UK - Alternating Hemiplegia of Childhood UKUKhttps://www.ahcuk.org/www.facebook.com/supportahcuksupport@ahcuk.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman Verein OsterreichAustriahttp://www.angelman.at/forschung/https://www.facebook.com/angelmanvereininfo@angelman.at
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman SyndroomBelgiumhttps://www.angelmansyndroom.be/https://www.facebook.com/Angelmansyndroompost@angelmansyndroom.be
Angelman SyndromeORPHA:72 - ICD-10: Q93.5AsgentCzech Republichttps://asgent.org/en/https://www.facebook.com/asgent.orginfo@asgent.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome AllianceEuropehttps://angelmanalliance.orghttps://www.facebook.com/AngelmanSyndromeAlliance/info@angelmanalliance.eu
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Syndrome Angelman FranceFrancehttp://www.syndromeangelman-france.org/https://www.facebook.com/Syndrome.Angelman.France/?fref=tssyndromeangelmanfrance@orange.fr
Angelman SyndromeORPHA:72 - ICD-10: Q93.5ASFA Association Francaise du syndrome dAngelmanFrancehttp://www.angelman-afsa.orghttps://www.facebook.com/syndrome.angelman.afsa/timeline/contact@angelman-afsa.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman e.V.Germanyhttps://angelman.de/https://www.facebook.com/Angelman.Elternvereinas-info@angelman.de
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman syndrome GreeceGreecehttps://angelman.gr/https://www.facebook.com/angelmansyndromegreece/info@angelman.gr
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Magyar Angelman Szindroma AlapitvanyHungaryhttp://angelman.hu/https://www.facebook.com/angelman.hu/angelmanalapitvany@gmail.com
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome IrelandIrelandhttp://www.angelman.ie/https://www.facebook.com/angelmansyndromeirelandadmin@angelman.ie
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Associazione Angelman OnlusItalywww.associazioneangelman.ithttps://www.facebook.com/Associazione-Angelman-264454530297881/associazioneangelman@gmail.com
Angelman SyndromeORPHA:72 - ICD-10: Q93.5OrsaItalyhttps://www.sindromediangelman.orghttps://www.facebook.com/sindromediangelmaninfo@sindromediangelman.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Nina FoundationNethelandshttps://ninafoundation.eu/index.phphttps://www.facebook.com/groups/377953913011/info@ninafoundation.eu
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelaman Syndroom NetherlandNetherlandshttps://www.angelmansyndroom.nl/https://www.facebook.com/groups/141570629343929/info@angelmansyndroom.nl
Angelman SyndromeORPHA:72 Fundacja AngelmanaPolandhttp://angelman.org.pl/https://www.facebook.com/fundacja.angelmana/fundacja.angelmana@gmail.com
Angelman SyndromeORPHA:72 FAST PolandPolandhttps://www.cureangelman.pl/https://www.facebook.com/FASTPLkontakt@cureangelman.pl
Angelman SyndromeORPHA:72 - ICD-10: Q93.5AngelPortugalhttp://www.angel.pthttps://www.facebook.com/AngelmanPT/geral@angel.pt
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Sindrome de AngelmanSpainhttp://www.angelman-asa.orghttps://www.facebook.com/asaangelman/?fref=tsinfo@angelman-asa.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman UKUKhttp://angelmanuk.orghttps://www.facebook.com/AngelmanUK/support@angelmanuk.org
Angelman SyndromeORPHA:72 - ICD-10: Q93.5Angelman UkraineUkrainehttps://www.genefund-future.com.ua/https://www.facebook.com/genofond.future/genofond.future@gmail.com
Batten diseaseORPHA:79264NCL - Gruppe Deutschland e. V.Germanyhttps://www.ncl-deutschland.de/https://www.facebook.com/NCLDeutschland?ref=ts&fref=tskontakt@ncl.info
Batten diseaseORPHA:79264Batten disease family associationUKhttp://www.bdfa-uk.org.uk/about-batten-disease/https://www.facebook.com/bdfaukadmin@bdfa-uk.org.uk
Brain injuryHeadwayUKhttps://www.headway.org.uk/https://www.facebook.com/headwayukenquiries@headway.org.uk
CASK-related disordersORPHA:163937, ORPHA:1934Associacion Enfants CASK FranceFrancehttps://www.aecf-france.fr/https://www.facebook.com/AssociationEnfantsCASKFranceassociationenfantscaskfrance@gmail.com
CASK-related disordersORPHA:163937, ORPHA:1934CASK Research UKUKhttps://caskresearch.org/https://web.facebook.com/Caskresearch
CDKL5ORPHA:1934CDKL5 Austria (Patient support group)Austriahttp://cdkl5.athttps://www.facebook.com/cdkl5austria/gademayr@immoadd.at
CDKL5ORPHA:1934CDKL5 Alliance FrancophoneFrancehttp://cdkl5.frhttps://www.facebook.com/CDKL5.frcontact@cdkl5.fr
CDKL5ORPHA:1934CDKL5 Georgia (Patient support group)Georgiahttp://gsiem.gehttps://www.facebook.com/CDKL5GEcdkl5georgia@gmail.com
CDKL5ORPHA:1934CDKL5 Deutschland e.V.Germanyhttps://www.cdkl5-verein.de/https://www.facebook.com/CDKL5DeutschlandOesterreichSchweiz/info@cdkl5-verein.de
CDKL5ORPHA:1934CDKL5 IrelandIrelandhttps://www.facebook.com/cdkl5irl/cdkl5ireland@gmail.com
CDKL5ORPHA:1934CDKL5 Insieme verso la curaItalyhttp://www.cdkl5insiemeversolacura.ithttps://www.facebook.com/cdkl5insiemeversolacurasoci.cdkl5@gmail.com
CDKL5ORPHA:1934CDKL5 NederlandNetherlandshttp://www.cdkl5.nl/https://www.facebook.com/groups/555857924496537/pam@cdkl5.nl
CDKL5ORPHA:1934CDKL5 Portugal (Patient support group)Portugalhttps://www.facebook.com/cdkl5portugal/aboutjpvieira88@gmail.com
CDKL5ORPHA:1934CDKL5 RussiaRussiahttps://www.facebook.com/groups/CDKL5Russia/aboutcdkl5russia@gmail.com
CDKL5ORPHA:1934CDKL5 SlovakiaSlovakiahttp://www.cdkl5.sk/https://www.facebook.com/CDKL5Slovakiainfo@cdkl5.sk
CDKL5ORPHA:1934AACDKL5: Asociacion de afectados CDKL5Spainhttps://aacdkl5.org/https://www.facebook.com/profile.php?id=100063533475207info@aacdkl5.org
CDKL5ORPHA:1934L'association suisse CDKL5 (Patient support group)Switzerlandhttps://www.cdkl-5.ch/fr.shtmlhttps://www.facebook.com/cdkl5suissekontakt@cdkl-5.ch
CDKL5ORPHA:1934CDKL5 UKUKhttps://curecdkl5.org.uk/https://www.facebook.com/CDKL5UKinfo@curecdkl5.org
Cerebral cavernous malformationORPHA:221061European Cavernoma AllianceEuropehttps://bit.ly/3kmm4behttps://www.facebook.com/EuropeanCavernomaAlliance/
Cerebral cavernous malformationORPHA:221061ACC - Association sur les Cavernomes CerbrauxFrancehttp://association-cavernome-cerebral.e-monsite.com/https://www.facebook.com/associationsurlescavernomescerebraux/cgrandet@orange.fr
Cerebral cavernous malformationORPHA:221061Bundesverband Angeborene Gefabfehlbildungen e.V.Germanyhttps://www.angiodysplasie.de/https://www.facebook.com/angiodysplasieinfo@angiodysplasie.de
Cerebral cavernous malformationORPHA:221061Cavernoma IrelandIrelandhttps://www.facebook.com/profile.php?id=100069352683815cavernomaireland@gmail.com
Cerebral cavernous malformationORPHA:221061ANACC Onlus - Associazione Nazionale Angioma Cavernoso CerebraleItalyhttps://www.anaccaps.orghttps://www.facebook.com/AngiomaCavernosoCerebraleLaCommunitypresidente@anacconlus.org
Cerebral cavernous malformationORPHA:221061Cavernoma PortugalPortugalhttps://www.cavernomaportugal.pthttps://www.facebook.com/CavernomaPortugal/info@cavernoma.pt
Cerebral cavernous malformationORPHA:221061AE-CCM: Asociacion Espanola de CavernomasSpainhttps://cavernomas.org/https://www.facebook.com/cavernomasinfo.cavernomas@gmail.com
Cerebral cavernous malformationORPHA:221061Cavernous Angioma Sweden (CASE)Swedenhttps://www.cavernostangiomsverige.org/https://www.facebook.com/CavernostAngiomSverige.CASEinfo@cavernostangiomsverigr.org
Cerebral cavernous malformationORPHA:221061Cavernoma Alliance UKUKhttps://cavernoma.org.uk/https://www.facebook.com/CavernomaAllianceUKhello@cavernoma.org.uk
CHD2 related epilepsyCoalition to cure CHD2USA (Global)https://www.curechd2.org/https://www.facebook.com/curechd2.orginfo@curechd2.org
CLCN4-related X-linked intellectual disability syndromeORPHA:485350Cure CLCN4UKhttps://cureclcn4.org/https://www.facebook.com/CureCLCN4/info@cureclcn4.org
CSWSSORPHA:725Asociacion de Afectados de Delecion 1p36Spainhttps://sindromepocs.orghttps://www.facebook.com/sindromePOCSinfo@sindromepocs.org
GABAAR variantsCure GABA-A US (global)https://curegabaa.org/https://web.facebook.com/profile.php?id=100091946025243&_rdc=1&_rdr#info@cureGABAa.org
Down syndrome related epilepsyORPHA:870European Down syndrome associationEuropehttp://www.edsa.eu/down-syndrome/https://www.facebook.com/edsachannel/info@edsa.eu
Dravet SyndromeORPHA: 33069Dravet DenmarkDenmarkhttps://dravet.dkhttps://www.facebook.com/dravetdk/postkasse@dravet.dk
Dravet SyndromeORPHA: 33069Dravet Syndrome European FederationEuropehttp://dravet.euhttps://www.facebook.com/draveteurope/info@dravet.eu
Dravet SyndromeORPHA: 33069Alliance Syndrome de DravetFrancehttps://www.dravet.frhttps://www.facebook.com/alliancesyndromededravetcontact@dravet.fr
Dravet SyndromeORPHA: 33069DRAVET-SYNDROM e.V.Germanyhttps://dravet.de/https://www.facebook.com/dravet.de/info@dravet.de
Dravet SyndromeORPHA: 33069Dravet Szindroma Magyarorszag EgyesuletHungaryhttps://www.dravet.hu/https://web.facebook.com/groups/686322194834648/?_rdc=1&_rdrdravethungary@outlook.com
Dravet SyndromeORPHA: 33069Dravet syndrome IrelandIrelandhttps://www.dravetsyndromeireland.org/https://www.facebook.com/dravetsyndromeireland/info@dravetsyndromeireland.org
Dravet SyndromeORPHA: 33069Dravet Italia OnlusItalyhttps://www.dravet.it/https://www.facebook.com/DravetItaliaOnlus/info@dravet.it
Dravet SyndromeORPHA: 33069Gruppo Famiglie DravetItalyhttps://www.sindromedidravet.orghttps://www.facebook.com/GruppoFamiglieDravetOnlus/gruppofamiglie@sindromedidravet.org
Dravet SyndromeORPHA: 33069Stichting Dravetsyndroom Nederland VlaanderenNetherlands/Belgiumhttps://www.dravetsyndroom.eu/https://www.facebook.com/profile.php?id=100068743472932info@dravetsyndroom.eu
Dravet SyndromeORPHA: 33069Epilepsiforbundet Dravet syndrom Norwayhttp://dravet.no/https://www.facebook.com/dravet.nodravet@epilepsi.no
Dravet SyndromeORPHA: 33069Dravet.plPolandhttp://www.dravet.plhttps://www.facebook.com/zespol.dravet/dravet@dravet.pl
Dravet SyndromeORPHA: 33069Associacao Sindrome de DravetPortugalhttps://dravet.pt/https://www.facebook.com/dravetportugal/geral@dravet.pt
Dravet SyndromeORPHA: 33069Dravet sindrom SrbijaSerbiahttp://www.dravetsrbija.orghttps://www.facebook.com/dravetsindromsrbija/irenachifor@gmail.com
Dravet SyndromeORPHA: 33069Dravet SlovenijaSloveniahttps://dravet.sihttps://www.facebook.com/groups/421045069006973info@dravet.si
Dravet SyndromeORPHA: 33069Fundacion Sindrome de DravetSpainhttps://dravetfoundation.eu/https://www.facebook.com/Fundacion.Sindrome.de.Dravet/informacion@dravetfoundation.eu
Dravet SyndromeORPHA: 33069Apoyo DravetSpainhttp://www.apoyodravet.eu/https://www.facebook.com/apoyodravet/contacto@apoyodravet.eu
Dravet SyndromeORPHA: 33069DRAVET Syndrome Association SwedenSwedenhttps://www.dravetssweden.se/info@dravetssweden.se
Dravet SyndromeORPHA: 33069Swiss Dravet Syndrome AssociationSwitzerlandhttps://dravet.chhttps://www.facebook.com/dravetchinfo@dravet.ch
Dravet SyndromeORPHA: 33069Dravet syndrome UKUKhttps://www.dravet.org.uk/https://www.facebook.com/dravetsyndromeuk/info@dravet.org.uk
Dravet Syndrome and other rare and complex epilepsiesORPHA: 33069Dravet sindrom HrvatskaCroatiahttps://dravet-sindrom-hrvatska.hr/https://www.facebook.com/DSHrvatska/?tn-str=k*Finfo@dravet-sindrom-hrvatska.hr
Dravet Syndrome and other epilepsiesORPHA: 33069EpicanaCzech Republichttp://www.epicana.cz/https://web.facebook.com/epicanacz?_rdc=1&_rdrinfo@epicana.cz
Dup15qORPHA:3306Dup15q FranceFrancehttps://www.dup15qfrance.frhttps://www.facebook.com/dup15qFrance/info@dup15qfrance.fr
Dup15qORPHA:3306Dup15q e.V.Germanyhttps://dup15q.de/https://www.facebook.com/dup15qeVkontakt@dup15q.de
Dup15qORPHA:3306Nonsolo15Italyhttp://www.idic15.it/idic15@idic15.it
Dup15qORPHA:3306Associacion Nacional del sindrome idic15Spainhttps://www.idic15q.com/https://www.facebook.com/profile.php?id=100064702145298&fref=tsinfo@idic15q.com
ECHS1ORPHA:653880Cure ECHS1USA (global)https://cure-echs1.com/contact.echs1@gmail.com
EncephalitisORPHA:97275Encephalitis SocietyUKwww.encephalitis.infohttps://www.facebook.com/EncephalitisSociety/mail@encephalitis.info
FIRESORPHA:163703Association ParatonnerreFrancehttps://associationparatonnerre.orghttps://www.facebook.com/AssociationParatonnerre/contact@associationparatonnerre.org
FOXG1 syndromeORPHA:561854Association FOXG1 FranceFrancehttps://foxg1france.fr/https://www.facebook.com/FOXG1France/contact@foxg1france.fr
FOXG1 syndromeORPHA:561854FoxG1 Deutschland e.V.Germanyhttps://www.foxg1.de/https://www.facebook.com/foxg1deinfo@foxg1.de
FOXG1 syndromeORPHA:561854FOXG1 UK CharityUKhttp://www.foxg1.ukhttps://www.facebook.com/foxg1uk/information@foxg1.uk
Fragile X related epilepsyORPHA:908European FRAGILE X NetworkEuropehttps://fragilex.eu/https://www.facebook.com/EuropeanFragileXNetwork
General Epilepsy AssociationsEpitopCzech Republichttps://www.epistop.cz/https://www.facebook.com/epistopzs/info@epistop.cz
General Epilepsy AssociationsSpolecnost ECzech Republichttps://www.spolecnost-e.cz/https://www.facebook.com/SpolecnostEinfo@spolecnost-e.cz
General Epilepsy AssociationsFederation des Associations de personnes handicapees par des epilepsies severesFrancehttp://efappe.epilepsies.fr/https://www.facebook.com/efappe.epilepsiesefappe@yahoo.fr
General Epilepsy AssociationsAuraLatviahttps://web.facebook.com/EpilepsijasbiedribaAura/?paipv=0&eav=AfZ4gktkATP8wk-R-wgt0BzdyxH4wl3k_-nOSQAxzpdmr84c3jkPkXIZAqJBf0_RQUo&_rdc=1&_rdrbiedribaaura@gmail.com
General Epilepsy AssociationsL'Association d'Aide aux Personnes Epileptiques AAPELuxembourghttp://www.aape.lu/aape@pt.lu
General Epilepsy AssociationsEpilepsialiittoFinlandhttps://www.epilepsia.fi/https://web.facebook.com/epilepsialiitto/?_rdc=1&_rdrepilepsialiitto@epilepsia.fi
General Epilepsy AssociationsEpilepsieNLNetherlandshttps://www.epilepsie.nl/https://web.facebook.com/EpilepsieNL/info@epilepsie.nl
General Epilepsy AssociationsPurple Day Espana-Apoyando a personas con epilepsiaSpainhttps://purpledayspain.orghttps://bit.ly/3KucZrNpurpledayspain@gmail.com
General Epilepsy AssociationsZivotSerbiahttps://www.zivotorg.org/https://bit.ly/3XYepgZcontact@zivotorg.org
General Epilepsy AssociationsSvenska EpilepsiforbundetSwedenhttps://www.epilepsi.se/https://web.facebook.com/svenskaepilepsiforbundet?_rdc=1&_rdrinfo@epilepsi.se
General Epilepsy AssociationsEpilepsy sparksUKhttps://www.epilepsysparks.com/https://www.facebook.com/epilepsysparks/info@epilepsysparks.com
General Epilepsy AssociationsEpilepsy ActionUKhttps://www.epilepsy.org.uk/https://www.facebook.com/epilepsyaction/epilepsy@epilepsy.org.uk
General Epilepsy AssociationsEpilepsy SocietyUKhttps://www.epilepsysociety.org.uk/https://www.facebook.com/EpilepsySociety/helpline@epilepsysociety.org.uk
General Epilepsy AssociationsEpilepsy ScotlandUKhttps://www.epilepsyscotland.org.uk/https://www.facebook.com/epilepsyscotland/admin@epilepsyscotland.org.uk
General Epilepsy AssociationsYoung EpilepsyUKwww.youngepilepsy.org.ukhttps://www.facebook.com/YoungEpilepsy/info@youngepilepsy.org.uk
General Epilepsy AssociationsHOPE LondonUKhttps://www.hopeforepilepsylondon.org.uk/https://www.facebook.com/HopePaediatricEpilepsyLondoninfo@hopeforepilepsylondon.org.uk
Glucose transporter type 1 deficinecy syndromeORPHA:71277 GLUT1 Austria Glukosetransporter Typ1 Defizienz Syndrom and Ketogene ErnahrungstherapieAustriahttps://www.glut1.at/?fbclid=IwAR3-UYbD3k0rP2h5Tiklxjtq-j5nosQQM2nVyHp_882VgX5OlffpdPU4V9ohttps://www.facebook.com/profile.php?id=100067698290590info@glut1.at
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Association sur le Syndrome du Deficit en Glut1Francehttps://asdglut1.wixsite.com/asdglut1asdglut1@gmail.com
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Forderverein Glukosetransporter(GLUT1)-Defekt e.V.Germanyhttp://glut1.de/info@glut1.de
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Glut1 Deficiency UK - Irish Contact PointIrelandhello@glut1deficiency.org.uk
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Associazione Italiana GLUT1Italyhttps://www.glut1.ithttps://www.facebook.com/associazioneitalianaglut1/famiglie@glut1.it
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Foreningen for GLUT1 dsNorwayhttps://www.glut1ds.no/https://www.facebook.com/groups/228127133942975post@glut1ds.no
Glucose transporter type 1 deficinecy syndromeORPHA:71277Fundacja GLUT1 PolskaPolandhttps://glut1.pl/https://www.facebook.com/glut1Polska/abichniewicz@gmail.com
Ketogenic diet/Glucose transporter type 1 deficinecy syndromeORPHA:71277Asociatia Dieta keto medicalaRomaniahttps://dietaketomedicala.ro/actiuni/evenimente/https://www.facebook.com/profile.php?id=100068167849529contactglut1.romania@gmail.com
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277asGLUTdiece-Asociacion Glut1 y enfermedades que responden a dieta cetogenicaSpainhttps://asglutdiece.org/info@asglutdiece.org
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277GLUT 1 Deficiency UKUKhttps://glut1deficiency.org.uk/https://www.facebook.com/Glut1DeficiencyUK/hello@glut1deficiency.org.uk
GNAO1-related developmental delay-seizures-movement disorder spectrumORPHA:592564GNAO1 tuki ryFinlandhttp://www.gnao1.fi/info@gnao1.fi
GNAO1-related developmental delay-seizures-movement disorder spectrumORPHA:592564Famiglie GNAO1 Italyhttps://gnao1.it/https://www.facebook.com/FamiglieGNAO1/info@gnao1.it
GNAO1-related developmental delay-seizures-movement disorder spectrumORPHA:592564Stichting GNAO1 NLNetherlandshttps://gnao1.nl/https://www.facebook.com/StichtingGNAO1NLinfo@gnao1.nl
GNAO1-related developmental delay-seizures-movement disorder spectrumORPHA:592564Asociacion GNAO1 EspanaSpainhttp://gnao1.es/https://www.facebook.com/profile.php?id=100081892385410asociaciongnao1@gmail.com
GNAO1-related developmental delay-seizures-movement disorder spectrumORPHA:592564Mondo GNAO1 UKUKhttps://mondo-uk.co.uk/https://www.facebook.com/mondognao1uk/info@mondo-uk.co.uk
GRIN related disordersORPHA:289266, ORPHA:589547GRIN AustriaAustriahttps://grinaustria.com/
GRIN related disordersORPHA:289266, ORPHA:589547GRIN EuropeEuropehttps://www.grineurope.org/https://www.facebook.com/grineuropeinfo@grineu.org
GRIN related disordersORPHA:289266, ORPHA:589547Asociacion Espanola de GRINpatiasSpainhttps://www.grinpatias.org/quienes-somoshttps://www.facebook.com/GRINpatia/info@grinpatias.org
GRIN2AORPHA:289266Associazione MGrin2a Italia OnlusItalyhttps://assmgrin2aitalia.it/https://www.instagram.com/mauriziogrin2aitalia/?hl=itinfo@assmgrin2aitalia.it
GRIN2BORPHA:589547GRIN2B Disorder Research FoundationIsraelhttps://www.gringn.com/https://www.facebook.com/groups/All.GRIN/
GRIN2BORPHA:589547Stichting GRIN syndroomNetherlandshttps://grinsyndroom.nl/https://www.facebook.com/groups/202306564791124info@grinsyndroom.nl
Hypothalamic HamartomaORPHA:86906Hope for Hypothalamic HamartomasUKwww.hopeforhh.orghttps://www.facebook.com/hopeforhhukinfouk@hopeforhh.org
Infantile spasms syndromeORPHA:3451LES ENFANTS DE WESTFrancehttps://famwest.hypotheses.org/https://www.facebook.com/groups/52683715391/enfantsdewest@hotmail.fr
Infantile spasms syndromeORPHA:3451FUNDACION SINDROME DE WESTSpainhttp://www.sindromedewest.org/https://www.facebook.com/fundacionsindromedewest/fundacion@sindromedewest.org
Infantile spasms syndromeORPHA:3451UK Infantile Spasms Trust- UKISTUKhttps://ukinfantilespasmstrust.org/https://www.facebook.com/UKInfantileSpasmsTrust/ukinfantilespasmstrust@gmail.com
Jacobsen syndromeORPHA:2308European Chromosome 11 NetworkEuropehttps://chromosome11.org/en/home/https://www.facebook.com/EuropeanChromosome11Network/?fref=tsboard@chromosome11.org
KCNB1ORPHA:442835Association KCNB1 FranceFrancehttps://kcnb1-france.org/https://www.facebook.com/kcnb1.france/contact@kcnb1-france.org
KCNQ2-related epileptic encephalopathyORPHA:439218European KCNQ2 AssociationEuropehttps://www.europeankcnq2association.comhttps://www.facebook.com/europeankcnq2associationeuropeankcnq2association@gmail.com
KCNQ2-related epileptic encephalopathyORPHA:439218KCNQ2 France DeveloppementFrancehttps://bit.ly/3IKPMQNhttps://www.facebook.com/kcnq2France/kcnq2francedev@gmail.com
KCNQ2-related epileptic encephalopathyORPHA:439218KCNQ2 e.V.Germanyhttps://kcnq2.de/https://www.facebook.com/KCNQ2-eV-222465818324480info@kcnq2.de
KCNQ2-related epileptic encephalopathyORPHA:439218Asociacion KCNQ2 EspanaSpainhttps://kcnq2espana.com/https://www.facebook.com/Kcnq2/kcnq2spain@gmail.com
KCNT1ORPHA:293181Une Etincelle Pour IsaureFrancehttps://uneetincellepourisaure.com/https://www.facebook.com/profile.php?id=100081013027978contact@uneetincellepourisaure.com
Ketogenic dietMatthew's FriendsUKhttps://www.matthewsfriends.org/https://www.facebook.com/matthewsfriends/enq@matthewsfriends.org
Leigh disease with myopathyORPHA:70474Stowarzyszenie Dzieci z Miopatia Mitochondrialna pod postacia zespolu Leigha Mali BohaterowiePolandhttps://www.malibohaterowie.org/kuc.jolanta@interia.pl
Lennox Gastaut syndromeORPHA:2382Associazione Famiglie LGS ItaliaItalyhttps://www.associazionelgs.ithttps://www.facebook.com/LGSITALIA/info@associazionelgs.it
Lennox Gastaut syndromeORPHA:2382LGS FoundationUSAhttps://www.lgsfoundation.org/https://www.facebook.com/lgsfoundation1info@lgsfoundation.org
LissencephalyORPHA:95232LISS - Anlaufstelle fur Eltern und Angehorige an Lissenzephalie leidender Kinder e.V.Germanyhttps://lissenzephalie.de/https://www.facebook.com/Lissevkontakt/kontakt@lissenzephalie.de
Metabolic diseases incluing ones that cause epilepsyAssociation of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"Cyprushttps://www.aspidazois.com/en/info@aspidazois.com
Migrating partial seizures of infancyORPHA:293181Asociacion Espanola de Afectados por Encefalopatia Epileptica con Punta Onda Continua durante el Sueno - POCSSpainhttps://sindromepocs.orghttps://www.facebook.com/sindromePOCSinfo@sindromepocs.org
Mitochondrial DiseasesNational Association of Patients with Mitochondrial Diseases in BulgariaBulgariahttps://bit.ly/3oVMlQhhttps://www.facebook.com/mitobg2019info@mitobg.com
Mitochondrial DiseasesAssociation contre les Maladies MitochondrialesFrancehttps://www.association-ammi.org/https://www.facebook.com/association.ammi/?ref=page_internalassoammi@gmail.com
Mitochondrial DiseasesAssociation Guerrier MitochondrialFrancehttps://associationguerrie.wixsite.com/agmitohttps://www.facebook.com/AGM-Association-Guerrier-Mitochondrial-103891979134573associationguerriermito@gmail.com
Mitochondrial DiseasesMitocon-Insieme per lo studio e la cura delle malattie mitocondrialiItalyhttps://www.mitocon.it/info@mitocon.it
Mitochondrial diseasesInternational Mito PatientsNetherlandshttps://www.mitopatients.org/info@mitopatients.org
Neurotransmiter diseasesDe Neu - Asociacion de Enfermedades de los NeurotransmisoresSpainhttps://www.deneu.org/https://www.facebook.com/asoc.deneu/info@deneu.org
NEXMIF related developmental and epileptic encephalopathy Unione Italiana NexmifItalyhttps://www.nexmif.it/info@nexmif.it
Development and epileptic encephalopathy 66 / PACS2 syndromeORPHA:442835PACS2 Research FoundationPolandhttps://www.pacs2research.org/https://www.facebook.com/pacs2researchpacs2research@gmail.com
PCDH19ORPHA:101039PCDH19 FranceFrancehttps://pcdh19france.fr/https://www.facebook.com/pcdh19francepcdh19france@gmail.com
PCDH19ORPHA:101039Insieme per la ricerca PCDH19 - OnlusItalyhttp://www.pcdh19research.org/index.htmlhttps://www.facebook.com/insiemepcdh19/insiemepcdh19@yahoo.it
PCDH19ORPHA:101039Asociacion Epilepsia Rosa Pcdh19Spainhttp://www.pcdh19.nethttps://www.facebook.com/profile.php?id=100064857304148
Pitt-Hopkins syndromeORPHA:2896Associazione Italiana Sindrome di Pitt HopkinsItalyhttps://www.facebook.com/profile.php?id=100064848844315segreteria@aisph.it
Pitt-Hopkins syndromeORPHA:2896Stichting Pitt Hopkins SyndroomNetherlandshttps://pitthopkins.nl/https://www.facebook.com/profile.php?id=100064315584814secretaris@pitthopkins.nl
Pitt-Hopkins syndromeORPHA:2896Associacao Sindrome Pitt-Hopkins PortugalPortugalhttp://asphp.pt/index.htmlhttps://www.facebook.com/groups/687786115377262info@asphp.pt
Pitt-Hopkins syndromeORPHA:2896PITT HOPKINS ESPANASpainhttps://pitthopkins.es/https://www.facebook.com/PittHopkinsSpain/info@pitthopkins.es
Pitt-Hopkins syndromeORPHA:2896PITT HOPKINS SYNDROMSwitzerland, Germany, Austriahttps://www.pitthopkins.ch/https://www.facebook.com/groups/1942372999198873info@pitthopkins.ch
Pitt-Hopkins syndromeORPHA:2896Pitt-Hopkins UKUKhttps://pitthopkins.org.uk/https://www.facebook.com/PitthopkinsUK/sue@pitthopkins.org.uk
Progressive Myoclonic EpilepsiesAMARMYUL - Association contre la maladie rare myoclonique d'Unverricht-LundborgFrancehttp://www.amarmyul.com/index.phpamarmyul@wanadoo.fr
PURA syndrome438216Pura PolskaPolandin progressin progressmonika.przetocka@fundacjapura.pl
Rare chromosomal anomalyValentin APAC-Association de Porteurs d'Anomalies ChromosomiquesFrancehttps://www.valentin-apac.org/https://www.facebook.com/AssoValentinAPAC/contact@valentin-apac.org
Rare chromosomal anomalyLEONA e.V.Germanyhttps://www.leona-ev.de/start/https://www.facebook.com/leonaverein/geschaeftsstelle@leona-ev.de
Rare chromosomal anomaly Unique-Rare Chromosome Disorder Support GroupUKhttps://rarechromo.org/https://www.facebook.com/Uniquerarechromosomedisordersupportgroup/info@rarechromo.org
RASopathy (MEK2 mutation)ORPHA: 638MEK2 Research FoundationPolandin progressin progressmek2research@gmail.com
Rett syndrome (MECP2)ORPHA:778Osterreichische Rett-Syndrom GesellschaftAustriahttp://www.rett-syndrom.at/https://www.facebook.com/RettSyndromAustria/kontakt@rett-syndrom.at
Rett syndrome (MECP2)ORPHA:778Belgische Rett Syndroom Vereniging v.z.wBelgiumhttp://www.rettsyndrome.be/brsv@rettsyndrome.be
Rett syndrome (MECP2)ORPHA:778Spolek rodicu a pratel divek s Rettovym syndromemCzech Republichttp://www.rett-cz.com/https://www.facebook.com/Rett-Community-219730424732417info@rett-cz.com
Rett syndrome (MECP2)ORPHA:778Landsforeningen Rett SyndromDenmarkhttp://www.rett.dk/rett@rett.dk
Rett syndrome (MECP2)ORPHA:778Rett Syndrome EuropeEuropehttp://www.rettsyndrome.euhttps://www.facebook.com/Rett-Syndrome-Europe-232940826831244info@rettsyndrome.eu
Rett syndrome (MECP2)ORPHA:778Rett ryFinlandhttps://rettfinland.fi/https://www.facebook.com/profile.php?id=100064379542013kirsi.peltonen@rettfinland.fi
Rett syndrome (MECP2)ORPHA:778AFSR-Association Francaise du Syndrome de RettFrancehttp://www.afsr.fr/https://www.facebook.com/AFSRett/contact@afsr.fr
Rett syndrome (MECP2)ORPHA:778RETT Deutschland e.V. Elternhilfe fur Kinder mit Rett SyndromGermanyhttp://www.rett.de/https://www.facebook.com/RettSyndromHilfeinfo@rett.de
Rett syndrome (MECP2)ORPHA:778Georgian Rett syndrome and other rare diseases associationGeorgiahttps://web.facebook.com/georgianrettsyndromeassociation/?_rdc=1&_rdrinfo@rettsyndrome.ge
Rett syndrome (MECP2)ORPHA:778RETT GreeceGreecehttp://www.rettgreece.gr/https://www.facebook.com/profile.php?id=100064325754093aggeloi_ghs@hotmail.com
Rett syndrome (MECP2)ORPHA:778Magyar Rett Szindroma AlapitvanyHungaryhttp://www.rettszindroma.hu/https://www.facebook.com/rettalapitvany/rettszindromaalapitvany@gmail.com
Rett syndrome (MECP2)ORPHA:778Rett Syndrome Rannsoknarsjodur GudrunarIcelandhttp://www.rettenglar.yolasite.com/ff@liu.is
Rett syndrome (MECP2)ORPHA:778The Rett Syndrome Association of IrelandIrelandhttp://www.rettsyndrome.ie/https://www.facebook.com/RettSyndromeIrelandinfo@rettsyndrome.ie
Rett syndrome (MECP2)ORPHA:778Associazione per la Ricerca sulla Sindrome di Rett - ONLUSItalyhttps://prorett.orghttps://www.facebook.com/prorettricerca/segreteria@prorett.org
Rett syndrome (MECP2)ORPHA:778AIRETT - ASSOCIAZIONE ITALIANA SINDROME DI RETTItalyhttps://www.airett.ithttps://www.facebook.com/profile.php?id=100064535566158direttivo@airett.it
Rett syndrome (MECP2)ORPHA:778Agotos labdaros ir paramos fondasLithuaniahttp://www.agotos.lt/https://www.facebook.com/agotos.lt/info@agotos.lt
Rett syndrome (MECP2)ORPHA:778Association Luxembourgeoise du Syndrome de RettLuxembourghttp://www.alsr.lu/info@alsr.lu
Rett syndrome (MECP2)ORPHA:778A.O. Copiii PloiiMoldovahttps://www.facebook.com/profile.php?id=100066583705064copiii.ploii@gmail.com
Rett syndrome (MECP2)ORPHA:778Nederlandse Rett Syndroom VerenigingNetherlandshttp://www.rett.nl/https://www.facebook.com/RettSyndroomNLinfo@rett.nl
Rett syndrome (MECP2)ORPHA:778Stichting Terre-Rett Syndroom FondsNetherlandshttps://stichtingterre.nl/https://www.facebook.com/RettSyndroomFonds.StichtingTerreinfo@stichtingterre.nl
Rett syndrome (MECP2)ORPHA:778Norsk Forening for Rett SyndromNorwayhttp://www.rettsyndrom.no/https://www.facebook.com/groups/125039484173866/post@rettsyndrom.no
Rett syndrome (MECP2)ORPHA:778Ogolnopolskie Stowarzyszenie Pomocy Osobom z Zespolem RettaPolandhttp://www.rettsyndrome.pl/https://www.facebook.com/zespol.retta/?fref=tsinfo@rettsyndrome.pl
Rett syndrome (MECP2)ORPHA:778Associacao Nacional de Pais e Amigos RettPortugalhttps://www.anpar.pt/https://www.facebook.com/ANPAR.SindromeRett.Portugal/anparett@gmail.com
Rett syndrome (MECP2)ORPHA:778Rett syndrome RussiaRussiahttp://www.rettsyndrome.ru/rettsyndrome@mail.ru
Rett syndrome (MECP2)ORPHA:778Nadacia pre pomoc l'udo'm postihnutym Rettovym Syndromom-SlovenskoSlovakiarettsyndrome.sk@gmail.com
Rett syndrome (MECP2)ORPHA:778Asociacion Espanola de Sindrome de RettSpainhttp://www.rett.es/https://www.facebook.com/rett.spaininfo@rett.es
Rett syndrome (MECP2)ORPHA:778Asociacio Catalana de la Sindrome de RettSpainhttps://rett.cat/https://www.facebook.com/RettCat/secretaria.rett@gmail.com
Rett syndrome (MECP2)ORPHA:778RSIS (Rett Syndrom i Sverige)Swedenhttp://www.rsis.se/https://www.facebook.com/groups/157880377585635info@rsis.se
Rett syndrome (MECP2)ORPHA:778Interessen-Gruppe Rett-Syndrom SchweizSwitzerlandhttp://www.rett.ch/https://www.facebook.com/rettvereinschweizinfo@rett.ch
Rett syndrome (MECP2)ORPHA:778Rett UKUKhttp://www.rettuk.org/https://www.facebook.com/RettUK/info@rettuk.org
Rett syndrome (MECP2)ORPHA:778Reverse RettUKhttp://reverserett.org.uk/https://www.facebook.com/reverserett/info@reverserett.org.uk
Ring Chromosome 14ORPHA:1440Ring14 - BelgiumBelgiumhttps://www.facebook.com/groups/ring14/ring14belgium@gmail.com
Ring Chromosome 14ORPHA:1440Ring 14 InternationalEuropehttp://www.ring14.orgmarin.eva@ring14.es
Ring Chromosome 14ORPHA:1440Ring14 - FranceFrancehttp://www.ring14.org/fr/https://www.facebook.com/groups/ring14/deguisne.ingrid@ring14.fr
Ring Chromosome 14ORPHA:1440Ring14 Italia OnlusItalyhttp://www.ring14.org/ita/https://www.facebook.com/groups/ring14/info@ring14.it
Ring Chromosome 14ORPHA:1440Ring14 - NetherlandsNetherlandshttp://www.ring14.nl/https://www.facebook.com/groups/ring14/info@ring14.nl
Ring Chromosome 14ORPHA:1440Ring14 - SpainSpainhttp://www.ring14.org/es/https://www.facebook.com/groups/ring14/marin.eva@ring14.es
Ring Chromosome 20ORPHA:1444Paziente Contatto isabellaItaly
Ring Chromosome 20ORPHA:1444Ring 20 research and supportGlobalhttp://ring20researchsupport.co.uk/https://www.facebook.com/Ring20ResearchandSupportUKring20@ring20researchsupport.co.uk
SCN2ASCN2A EuropeEuropehttps://www.scn2a.eu/https://www.facebook.com/SCN2AEuropescn2a@web.de
SCN2ASCN2A GeorgiaGeorgiahttps://bit.ly/41fRlNQzhanachokheli02@gmail.com
SCN2ASCN2A Famiglie in retteItalyhttps://scn2a-italia.it/https://www.facebook.com/SCN2AItaliainfo@scn2a-italia.it
SCN2ASCN2A EspanaSpainhttps://www.facebook.com/scn2ascn2aespana@gmail.com
SCN2ASCN2A Families UKUKhttps://www.scn2afamiliesuk.co.uk/https://www.facebook.com/scn2auk/info@scn2afamiliesuk.co.uk
SCN8ASCN8A EuropeEuropehttps://www.scn8a.euhttps://www.facebook.com/scn8aeurope
SCN8ASCN8A FranceFrancehttps://www.scn8a.fr/https://www.facebook.com/profile.php?id=100079767607858scn8a.france@gmail.com
SCN8ASCN8A ItaliaItalyhttps://www.scn8a.it/#https://www.facebook.com/scn8aitaliainfo@scn8a.it
SCN8AStichting SCN8A NederlandNetherlandshttps://www.facebook.com/profile.php?id=100083313916042hello@scn8a.nl
SCN8ASCN8A PortugalPortugalhttps://www.facebook.com/SCN8APortugal/scn8a.portugal@gmail.com
SCN8ASCN8A SpainSpainhttps://www.scn8a.es/https://www.facebook.com/groups/624848921623571info@scn8a.es
SCN8ASCN8A UK and IrelandUK, Irelandhttps://www.scn8a.co.ukhttps://www.facebook.com/profile.php?id=100068115247244SCN8A.ukie@gmail.com
SLC13A5Tess Research FoundationUSA (global)https://www.tessresearch.org/https://www.facebook.com/TESSresearch/info@tessfoundation.org
SLC6A1ORPHA:1942VZW-GENBelgiumhttps://www.vzw-gen.be/https://www.facebook.com/vzwgeninfo@vzw-gen.be
SLC6A1ORPHA:1942SLC6A1 Connect ItaliaItalyhttps://www.slc6a1connectitalia.ithttps://www.facebook.com/SLC6A1ConnectItaliainfo@slc6a1connectitalia.it
SLC6A1ORPHA:1942SLC6A1 SpainSpainhttps://slc6a1-spain.org/
Sturge-Weber syndromeORPHA:3205Association Vanille-Fraise (Association Francaise Sturge-Weber)Francehttps://www.vanille-fraise.org/https://www.facebook.com/Juliaetlesyndromesturgeweber/association@vanille-fraise.org
Sturge-Weber syndromeORPHA:3205Interessengemeinschaft Sturge-Weber-Syndrom e.V.Germanyhttps://www.sturge-weber.de/https://www.facebook.com/profile.php?id=100063822548109info@sturge-weber.de
Sturge-Weber syndromeORPHA:3205Sturge Weber ItaliaItalyhttp://www.sturgeweberitalia.orghttps://www.facebook.com/sturgeweberitaliainfo@sturgeweberitalia.org
Sturge-Weber syndromeORPHA:3205NvWSWs - Nederlandse vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroomNetherlandshttps://www.wijnvlek-sturgeweber.nl/https://www.facebook.com/NvWSWsinfo@wijnvlek-sturgeweber.nl
Sturge-Weber syndromeORPHA:3205AESSW - Asociacion Espanola Sindrome de Sturge WeberSpainhttps://www.facebook.com/AESSW/info@sturge-weber.es
Sturge-Weber syndromeORPHA:3205Sturge-Weberforeningen SverigeSwedenhttp://www.sturge-weber.se/joacim.stahl@sturge-weber.se
Sturge-Weber syndromeORPHA:3205Sturge Weber Foundation UKUKhttps://www.sturgeweber.org.uk/https://www.facebook.com/SWUKFanPage/support@sturgeweber.org.uk
STXBP1-related encephalopathyORPHA:599373STXBP1 FranceFrancehttps://www.stxbp1france.com/stxbp1france@gmail.com
STXBP1-related encephalopathyORPHA:599373STXBP1 e.V.Germanyhttps://stxbp1.de/gilberte.schnur@web.de
STXBP1-related encephalopathyORPHA:599373STXBP1 ItaliaItalyhttps://www.stxbp1.it/home/https://www.facebook.com/stxbp1.italia/info@stxbp1.it
STXBP1-related encephalopathyORPHA:599373Asociacion Sindrome STXBP1Spainhttps://stxbp1.es/en/https://www.facebook.com/stxbp1info@stxbp1.es
STXBP1-related encephalopathyORPHA:599373STXBP1 PolskaPolandhttps://stxbp1.pl/?fbclid=IwAR2XDFAWJyR0DlMo8w_X3JG962jUcdZS59Rse6vu_UScuvGQUTBP1fqkE2ohttps://www.facebook.com/stxbp1plmail@stxbp1.pl
SUDEP SUDEP Action DayUKhttps://sudepactionday.orghttps://www.facebook.com/SUDEPAction.orginfo@sudep.org
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254Syngap Elternhilfe e.V.Germanyhttp://www.syngap.de/https://www.facebook.com/groups/605937599747915/kontakt@syngap.de
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254Bridgesyngap (SYNGAP1 support Group)- Irish Contact PointIrelandsyngap1roi@gmail.com
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254SYNGAP1 ItaliaItalyhttps://www.syngap1.it/https://www.facebook.com/syngap1italiasi.amo@syngap1.it
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254SYNGAP1 PortugalPortugalhttps://www.facebook.com/profile.php?id=100068049530734syngap1portugal@gmail.com
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254Asociacion SYNGAP1 EspanaSpainhttps://xn--syngap1espaa-khb.es/https://www.facebook.com/profile.php?id=100081547130803info@syngap1.es
SYNGAP1 - synaptic Ras GTPase activating protein 1ORPHA:544254SYNGAP1 UKUKhttps://syngapuk.org/
Tuberous sclerosisORPHA:805Tuberose Sklerose OsterreichAustriahttp://www.tuberoesesklerose.at/info@tuberoesesklerose.at
Tuberous sclerosisORPHA:805be-TSCBelgiumhttps://www.betsc.be/fr/info@betsc.be
Tuberous sclerosisORPHA:805Dansk forening for Tuberos ScleroseDenmarkhttp://tsdanmark.dk/https://www.facebook.com/groups/211655862240218/?fref=tsformand@tsdanmark.dk
Tuberous sclerosisORPHA:805European Tuberous Sclerosis Complex AssociationEuropehttps://www.e-tsc.eu/https://www.facebook.com/ETSCAssociation/info@e-tsc.eu
Tuberous sclerosisORPHA:805Sclerose Tubereuse de BournevilleFrancehttps://astb.asso.fr/https://www.facebook.com/ASTB2015contact@astb.asso.fr
Tuberous sclerosisORPHA:805Tuberose Sklerose Deutschland e.V.Germanyhttps://www.tsdev.orghttps://www.facebook.com/TSDeV.org/info@tsdev.org
Tuberous sclerosisORPHA:805Hungarian Foundation for Tuberous SclerosisHungaryhttps://www.tsc.hu/https://www.facebook.com/sclerosistuberosa/info@tsc.hu
Tuberous sclerosisORPHA:805TSC IrelandIrelandhttps://tscireland.org/https://www.facebook.com/TSCIreland/info@tscireland.org
Tuberous sclerosisORPHA:805Associazione Sclerosi TuberosaItalyhttp://www.sclerosituberosa.org/home/https://www.facebook.com/groups/360361414135616/info@sclerosituberosa.org
Tuberous sclerosisORPHA:805Stichting Tubereuse Sclerosis Nederland (STSN)Netherlandshttps://stsn.nl/https://www.facebook.com/levenmetTSC/info@stsn.nl
Tuberous sclerosisORPHA:805Norsk forening for Tuberos Sklerose KompleksNorwayhttps://www.nfts.no/https://www.facebook.com/nftscpost@nfts.no
Tuberous sclerosisORPHA:805Stowarzyszenie Chorych Na Stwardnienie GuzowatePolandhttps://www.stwardnienie-guzowate.eu/https://www.facebook.com/PolishTSCAssociationstowarzyszenie.stw.guz@wp.pl
Tuberous sclerosisORPHA:805A.E.T.N.Portugalhttps://www.esclerosetuberosa.org.pt/homehttps://www.facebook.com/esclerosetuberosa/info@esclerosetuberosa.org.pt
Tuberous sclerosisORPHA:805ASTUS-Asociacia tuberoznej sklerozySlovakiahttps://www.diagnozatsc.sk/https://www.facebook.com/astus.sk/astus@astus.sk
Tuberous sclerosisORPHA:805Esclerosis Tuberosa BarcelonaSpainhttps://esclerosistuberosa.wordpress.comhttps://www.facebook.com/profile.php?id=100064488618312
Tuberous sclerosisORPHA:805Asociacion Espanola Esclerosis TuberosaSpainhttp://esclerosistuberosa.org/https://www.facebook.com/asociacionespanoladeesclerosistuberosa/info@esclerosistuberosa.org
Tuberous sclerosisORPHA:805TSC ServigeSwedenhttps://tsc-sverige.se/https://www.facebook.com/tscsverige/info@tsc-sverige.se
Tuberous sclerosisORPHA:805TSA- Tuberous sclerosis associationUKhttp://www.tuberous-sclerosis.orghttps://www.facebook.com/thetsaukadmin@tuberous-sclerosis.org
Tuberous sclerosisORPHA:805The All-Ukrainian Association for the Care of Tuberous SclerosisUkrainehttp://www.tuberoussclerosis.com.ua/https://www.facebook.com/groups/www.tuberoussclerosis.com.ua/tscukraine@gmail.com

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

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The medical team members of the European Reference Network EpiCARE, in collaboration with patient advocates, develop and deliver highly-specialized diagnostics and care to improve interventions and outcome in individuals with rare and complex epilepsies.

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Funding

The ERN EpiCARE was created in 2017 and is co-funded by the European Union.

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