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 diseaseOrphacodeRepresentativeNationalityWebsiteFacebook PageEmail
ORPHA:592564Stichting GNAO1 NLNetherlandshttps://gnao1.nl/https://www.facebook.com/StichtingGNAO1NLinfo@gnao1.nl
ORPHA:592564Mondo GNAO1 UKUKhttps://mondo-uk.co.uk/https://www.facebook.com/mondognao1uk/info@mondo-uk.co.uk
1p36 deletionORPHA:1606Asociacion de Afectados de Delecion 1p36Spainhttps://www.delecion1p36.es/https://www.facebook.com/delecion1p36/info@delecion1p36.es
22q11Relais 22 asblBelgiumhttp://www.relais22.be/https://www.facebook.com/relais22asbltresorerie@relais22.be
22q11ORPHA:261330VercafaBelgiumhttps://www.vecarfa.be/info@vecarfa.be
22q1122Q11 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
22q11GENERATION 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
22q1122q11 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
22q11Stichting Steun 22q11Nethelandshttps://www.steun22q11.nl/info@steun22Q11.nl
22q11ORPHA:567, ORPHA:172722q11 PolskaPolandhttps://www.22q11.pl/kontakt@22q11.pl
22q11Asociacion Sindrome 22q11Spainhttps://www.22q.es/https://www.facebook.com/22q.esinfo@22q.es
22q11Foreningen 22q11Swedenhttps://www.22q11.se/r-marie@telia.com
22q11ORPHA:261330Connect22Switzerlandhttps://connect22.ch/laurent.gremaud@connect22.ch
22q11Max 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
Acute encephalopathy with inflammation-mediated status epilepticusORPHA:363567
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: G98Francewww.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: G98Polandwww.stow.ahc-pl.orgwww.facebook.com/ahcpolandinfo@stow.ahc-pl.org
Alternating Hemiplegia of ChildhoodORPHA:2131 | ICD-10: G98Spainwww.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
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman Verein OsterreichAustriahttp://www.angelman.at/forschung/https://www.facebook.com/angelmanvereininfo@angelman.at
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman SyndroomBelgiumhttps://www.angelmansyndroom.be/https://www.facebook.com/Angelmansyndroompost@angelmansyndroom.be
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5AsgentCzech Republichttps://asgent.org/en/https://www.facebook.com/asgent.orginfo@asgent.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome AllianceEuropehttps://angelmanalliance.orghttps://www.facebook.com/AngelmanSyndromeAlliance/info@angelmanalliance.eu
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Syndrome Angelman FranceFrancehttp://www.syndromeangelman-france.org/https://www.facebook.com/Syndrome.Angelman.France/?fref=tssyndromeangelmanfrance@orange.fr
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Francehttp://www.angelman-afsa.orghttps://www.facebook.com/syndrome.angelman.afsa/timeline/contact@angelman-afsa.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman e.V.Germanyhttps://angelman.de/https://www.facebook.com/Angelman.Elternvereinas-info@angelman.de
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman syndrome GreeceGreecehttps://angelman.gr/https://www.facebook.com/angelmansyndromegreece/info@angelman.gr
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Hungaryhttp://angelman.hu/https://www.facebook.com/angelman.hu/angelmanalapitvany@gmail.com
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman Syndrome IrelandIrelandhttp://www.angelman.ie/https://www.facebook.com/angelmansyndromeirelandadmin@angelman.ie
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Associazione Angelman OnlusItalywww.associazioneangelman.ithttps://www.facebook.com/Associazione-Angelman-264454530297881/associazioneangelman@gmail.com
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5OrsaItalyhttps://www.sindromediangelman.orghttps://www.facebook.com/sindromediangelmaninfo@sindromediangelman.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Nina FoundationNethelandshttps://ninafoundation.eu/index.phphttps://www.facebook.com/groups/377953913011/info@ninafoundation.eu
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelaman Syndroom NetherlandNetherlandshttps://www.angelmansyndroom.nl/https://www.facebook.com/groups/141570629343929/info@angelmansyndroom.nl
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5AngelPortugalhttp://www.angel.pthttps://www.facebook.com/AngelmanPT/geral@angel.pt
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Sindrome de AngelmanSpainhttp://www.angelman-asa.orghttps://www.facebook.com/asaangelman/?fref=tsinfo@angelman-asa.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman UKUKhttp://angelmanuk.orghttps://www.facebook.com/AngelmanUK/support@angelmanuk.org
Angelmans SyndromeORPHA:72 - ICD-10: Q93.5Angelman UkraineUkrainehttps://www.genefund-future.com.ua/https://www.facebook.com/genofond.future/genofond.future@gmail.com
Batten diseaseNCL - 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
CASKFrancehttps://www.aecf-france.fr/https://www.facebook.com/AssociationEnfantsCASKFranceassociationenfantscaskfrance@gmail.com
CDKL5ORPHA:1934CDKL5 AustriaAustriahttp://cdkl5.athttps://www.facebook.com/cdkl5austria/gademayr@immoadd.at
CDKL5ORPHA:1934CDKL5 Alliance FrancophoneFrancehttp://cdkl5.frhttps://www.facebook.com/CDKL5.frcontact@cdkl5.fr
CDKL5ORPHA:1934CDKL5 GeorgiaGeorgiahttp://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:1934ASSOCIAZIONE CDKL5Italyhttp://www.cdkl5.org/https://www.facebook.com/cdkl5italia?ref=ts&fref=tsinfo@cdkl5.org
CDKL5ORPHA:1934CDKL5 NederlandNetherlandshttp://www.cdkl5.nl/https://www.facebook.com/groups/555857924496537/pam@cdkl5.nl
CDKL5ORPHA:1934CDKL5 PortugalPortugalhttps://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:1934Spainhttps://aacdkl5.org/https://www.facebook.com/profile.php?id=100063533475207info@aacdkl5.org
CDKL5ORPHA:1934Switzerlandhttps://www.cdkl-5.ch/fr.shtmlhttps://www.facebook.com/cdkl5suissekontakt@cdkl-5.ch
CDKL5ORPHA:1934Cure CDKL5UKhttps://curecdkl5.org.uk/https://www.facebook.com/CDKL5UKinfo@curecdkl5.org
CDKL5ORPHA:1934Loulou FoundationUKhttps://www.louloufoundation.org/https://www.facebook.com/louloufoundationcontact@louloufoundation.org
Cerebral cavernous malformationORPHA:221061European Cavernoma AllianceEuropehttps://bit.ly/3kmm4behttps://www.facebook.com/EuropeanCavernomaAlliance/
Cerebral cavernous malformationORPHA:221061Francehttp://association-cavernome-cerebral.e-monsite.com/https://www.facebook.com/associationsurlescavernomescerebraux/cgrandet@orange.fr
Cerebral cavernous malformationORPHA:221061Germanyhttps://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:221061Spainhttps://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 syndromeCure CLCN4UKhttps://cureclcn4.org/https://www.facebook.com/CureCLCN4/info@cureclcn4.org
CSWSSORPHA:725Asociacion Espanola de Afectados por Encefalopatia Epileptica con Punta Onda Continua durante el Sueno - POCSSpainhttps://sindromepocs.orghttps://www.facebook.com/sindromePOCSinfo@sindromepocs.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 syndrome IrelandIrelandhttps://www.dravetsyndromeireland.org/https://www.facebook.com/dravetsyndromeireland/info@dravetsyndromeireland.org
Dravet SyndromeORPHA: 33069Dravet Italia OnlusItalyhttp://www.dravet-italia.orghttps://www.facebook.com/DravetItaliaOnlus/
info@dravet-italia.org"
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: 33069Portugalhttps://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
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
ECHS1Cure 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 syndormeORPHA:561854Association FOXG1 FranceFrancehttps://foxg1france.fr/https://www.facebook.com/FOXG1France/contact@foxg1france.fr
FOXG1 syndormeORPHA:561854FoxG1 Deutschland e.V.Germanyhttps://www.foxg1.de/https://www.facebook.com/foxg1deinfo@foxg1.de
FOXG1 syndormeORPHA: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 AssociationsLuxembourghttp://www.aape.lu/aape@pt.lu
General Epilepsy AssociationsPurple Day Espana-Apoyando a personas con epilepsiaSpainhttps://purpledayspain.orghttps://bit.ly/3KucZrNpurpledayspain@gmail.com
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 AssociationsFRhttp://efappe.epilepsies.fr/ https://www.facebook.com/efappe.epilepsiesefappe@yahoo.fr
General Epilepsy AssociationsHOPE LondonUKhttps://www.hopeforepilepsylondon.org.uk/https://www.facebook.com/HopePaediatricEpilepsyLondoninfo@hopeforepilepsylondon.org.uk
General Epilepsy Associationswww.kinderepilepsie.beinfo@kinderepilepsie.be
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Francehttps://asdglut1.wixsite.com/asdglut1asdglut1@gmail.com
Glucose transporter type 1 deficinecy GLUT1ORPHA:71277Germanyhttp://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 GLUT1ORPHA:71277Spainhttps://aglutinate.org/https://www.facebook.com/aglutinateGLUT1/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://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:592564Spainhttp://gnao1.es/https://www.facebook.com/profile.php?id=100081892385410asociaciongnao1@gmail.com
GRIN related disordersORPHA:289266, ORPHA:589547GRIN AustriaAustriahttps://grinaustria.com/
GRIN related disordersORPHA:289266, ORPHA:589547GRIN EuropeEuropehttp://grin2b.euhttps://www.facebook.com/grineuropeadmin@grin2b.eu
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
GRIN2BORPHA:589547Spainhttps://www.grinpatias.org/quienes-somoshttps://www.facebook.com/GRINpatia/info@grinpatias.org
Hypothalamic HamartomaORPHA:86906Hope for Hypothalamic HamartomasUKwww.hopeforhh.orghttps://www.facebook.com/hopeforhhukinfouk@hopeforhh.org
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
KCNq2ORPHA:439218European KCNQ2 AssociationEuropehttps://www.europeankcnq2association.comhttps://www.facebook.com/europeankcnq2associationeuropeankcnq2association@gmail.com
KCNq2ORPHA:439218KCNQ2 France DeveloppementFrancehttps://bit.ly/3IKPMQNhttps://www.facebook.com/kcnq2France/kcnq2francedev@gmail.com
KCNq2ORPHA:439218KCNQ2 e.V.Germanyhttps://kcnq2.de/https://www.facebook.com/KCNQ2-eV-222465818324480info@kcnq2.de
KCNq2ORPHA:439218Spainhttps://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
KCNT1ORPHA:293181KCNT1 / NLNetherlandsAnitanoordhoff@gmail.com
KCNT1ORPHA:293181Valeria AssociationSwitzerlandhttps://www.valeria-association.com/en/https://www.facebook.com/rettevaleria/support@valerias.org
Ketogenic dietUKhttps://www.matthewsfriends.org/https://www.facebook.com/matthewsfriends/enq@matthewsfriends.org
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:95232Germanyhttps://lissenzephalie.de/https://www.facebook.com/Lissevkontakt/kontakt@lissenzephalie.de
LKSORPHA:98818Spainhttps://www.facebook.com/landaukleffner/slkpenelope@gmail.com
LKSORPHA:98818FOLKSUKhttps://www.facebook.com/FamiliesOfLandauKleffnerSyndromeinfo@friendsoflks.com
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 infancySpainhttps://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 DiseasesORPHA:2598Association 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 DiseasesItalyhttps://www.mitocon.it/info@mitocon.it
Mitochondrial diseasesInternational Mito PatientsNetherlandshttps://www.mitopatients.org/info@mitopatients.org
Neurotransmiter diseasesSpainhttps://www.deneu.org/https://www.facebook.com/asoc.deneu/info@deneu.org
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:101039Spainhttp://www.pcdh19.nethttps://www.facebook.com/profile.php?id=100064857304148
Pitt-HopkinsPitt-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
Rare chromosomal anomalyFrancehttps://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 anomalyUKhttps://rarechromo.org/https://www.facebook.com/Uniquerarechromosomedisordersupportgroup/info@rarechromo.org
Rare diseases in children/Batten diseaseSerbiahttps://www.zivotorg.org/https://bit.ly/3XYepgZcontact@zivotorg.org
Rett syndrome (MECP2)ORPHA:778Austriahttp://www.rett-syndrom.at/https://www.facebook.com/RettSyndromAustria/kontakt@rett-syndrom.at
Rett syndrome (MECP2)ORPHA:778Belarusyulianna081982@mail.ru
Rett syndrome (MECP2)ORPHA:778Belgische Rett Syndroom Vereniging v.z.wBelgiumhttp://www.rettsyndrome.be/brsv@rettsyndrome.be
Rett syndrome (MECP2)ORPHA:778Bulgariaiva_66@mail.bg
Rett syndrome (MECP2)ORPHA:778Cyprusbob20v@cytanet.com.cy
Rett syndrome (MECP2)ORPHA:778Czech 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:778Estonia
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:778Francehttp://www.afsr.fr/https://www.facebook.com/AFSRett/contact@afsr.fr
Rett syndrome (MECP2)ORPHA:778Germanyhttp://www.rett.de/https://www.facebook.com/RettSyndromHilfeinfo@rett.de
Rett syndrome (MECP2)ORPHA:778RETT Greecehttp://www.rettgreece.gr/https://www.facebook.com/profile.php?id=100064325754093aggeloi_ghs@hotmail.com
Rett syndrome (MECP2)ORPHA:778Hungaryhttp://www.rettszindroma.hu/https://www.facebook.com/rettalapitvany/rettszindromaalapitvany@gmail.com
Rett syndrome (MECP2)ORPHA:778Icelandhttp://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:778Syndrome de Rett: LuxembourgLuxembourgninakocan@hotmail.com
Rett syndrome (MECP2)ORPHA:778Moldovahttps://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:778Netherlandshttps://stichtingterre.nl/https://www.facebook.com/RettSyndroomFonds.StichtingTerreinfo@stichtingterre.nl
Rett syndrome (MECP2)ORPHA:778Norsk Forening for Rett SyndromNorwayhttp://www.rettsyndrom.no/post@rettsyndrom.no
Rett syndrome (MECP2)ORPHA:778Polandhttp://www.rettsyndrome.pl/https://www.facebook.com/zespol.retta/?fref=tsinfo@rettsyndrome.pl
Rett syndrome (MECP2)ORPHA:778Portugalhttps://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:778Serbiakajaprda@yahoo.com
Rett syndrome (MECP2)ORPHA:778Slovakiarettsyndrome.sk@gmail.com
Rett syndrome (MECP2)ORPHA:778Spainhttp://www.rett.es/https://www.facebook.com/rett.spaininfo@rett.es
Rett syndrome (MECP2)ORPHA:778Spainhttps://rett.cat/https://www.facebook.com/RettCat/secretaria.rett@gmail.com
Rett syndrome (MECP2)ORPHA:778Spainhttps://sensebarreres.es/https://www.facebook.com/sensebarreres.asociaciondiscapacitadossensebarreres@sensebarreres.es
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 & support UKUKhttp://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
SCN2ASpainhttps://www.facebook.com/scn2ascn2aespana@gmail.com
SCN2ASCN2A Families UKUKhttps://www.scn2afamiliesuk.co.uk/https://www.facebook.com/scn2auk/info@scn2afamiliesuk.co.uk
SCN8AORPHA:442835SCN8A EuropeEuropehttps://www.scn8a.euhttps://www.facebook.com/scn8aeurope
SCN8AORPHA:442835SCN8A FranceFrancehttps://www.scn8a.fr/https://www.facebook.com/profile.php?id=100079767607858scn8a.france@gmail.com
SCN8AORPHA:442835SCN8A ItaliaItalyhttps://www.scn8a.it/#https://www.facebook.com/scn8aitaliainfo@scn8a.it
SCN8AORPHA:442835SCN8A NederlandNetherlandshttps://www.facebook.com/profile.php?id=100083313916042hello@scn8a.nl
SCN8AORPHA:442835SCN8A PortugalPortugalhttps://www.facebook.com/SCN8APortugal/scn8a.portugal@gmail.com
SCN8AORPHA:442835SCN8A SpainSpainhttps://www.scn8a.es/https://www.facebook.com/groups/624848921623571info@scn8a.es
SCN8AORPHA:442835SCN8A UK&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
SLCA61ORPHA:1942SLC6A1 Connect ItaliaItalyhttps://www.slc6a1connectitalia.ithttps://www.facebook.com/SLC6A1ConnectItaliainfo@slc6a1connectitalia.it
Sturge-Weber syndromeORPHA:3205Francehttps://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: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.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:599373Spainhttps://stxbp1.es/en/https://www.facebook.com/stxbp1info@stxbp1.es
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:544254Spainhttps://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:805Austriahttp://www.tuberoesesklerose.at/info@tuberoesesklerose.at
Tuberous sclerosisORPHA:805Belgiumhttps://www.betsc.be/fr/info@betsc.be
Tuberous sclerosisORPHA:805Denmarkhttp://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:805Francehttps://astb.asso.fr/https://www.facebook.com/ASTB2015contact@astb.asso.fr
Tuberous sclerosisORPHA:805Germanyhttps://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:805Tuberous Sclerosis FoundationNetherlandshttps://stsn.nl/https://www.facebook.com/levenmetTSC/info@stsn.nl
Tuberous sclerosisORPHA:805Norwayhttps://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:805Slovakiahttps://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:805Spainhttp://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
West syndromeORPHA:3451ASSOCIATION DE PARENTS CONCERNES PAR LE SYNDROME DE WESTFrancehttp://sudwest.free.fr/sudwest@free.fr
West syndromeORPHA:3451LES ENFANTS DE WESTFrancehttps://famwest.hypotheses.org/les-enfants-de-west-2https://www.facebook.com/groups/52683715391/enfantsdewest@hotmail.fr
West syndromeORPHA:3451Spainhttp://www.sindromedewest.org/https://www.facebook.com/fundacionsindromedewest/fundacion@sindromedewest.org
West syndromeORPHA:3451UK Infantile Spasms Trust- UKISTUKhttps://ukinfantilespasmstrust.org/https://www.facebook.com/UKInfantileSpasmsTrust/ukinfantilespasmstrust@gmail.com

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