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 disease | OrphanCode | Representative | Nationality | Facebook Page | Website | Responsable | |
---|---|---|---|---|---|---|---|
1p36 deletion | ORPHA:1606 | Spain | https://www.facebook.com/delecion1p36/ | https://www.delecion1p36.es/ | info@delecion1p36.es | ||
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | Spain | https://www.facebook.com/AHCSpain/ | www.aesha.org | Bridget Vranckx | info@aesha.org | |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | France | www.afha.org | Dominique Poncelin | contact@afha.org | ||
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHCFE - AHC Federation of Europe | EU | https://www.facebook.com/ahcfe/ | http://www.ahcfe.eu | Katherine Behl | info@ahcfe.eu |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHC Association of Iceland | Iceland | https://www.ahc.is/frontpage/ | Sigurdur H Johannesson | ahc@ahc.is | |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHC18+ e.V. | Germany | https://www.facebook.com/Association-ahc18-606879759444135/ | https://www.ahc18plus.org/ | Marek Parowiz | ahc18plus@gmail.com |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHC UK - Alternating Hemiplegia of Childhood UK | UK | www.facebook.com/supportahcuk | https://www.ahcuk.org/ | Katherine Behl | support@ahcuk.org |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | Poland | www.facebook.com/ahcpoland | www.stow.ahc-pl.org | Ilona Skibi?ska-Mamzer ; Marek Parowiz | info@stow.ahc-pl.org | |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHC VERENIGING NEDERLAND | Netherland | www.facebook.com/AHCkidsNL | www.ahckids.nl | Willem Zorge | info@ahckids.nl |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | AHC Kids Denmark | Denmark | www.ahckids.dk | Suffia Madsen | suffiam@gmail.com | |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | Alternating Hemiplegia of Childhood Ireland (AHCI) | Ireland | http://www.ahci.ie/ | info@ahci.ie | ||
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | Alternating Hemiplegia of Childhood Bulgaria | Bulgaria | https://www.facebook.com/bulgaria.ahc/ | https://www.ahcbg.org/en/ | Anton Katsarov | info@ahcbg.org |
Alternating Hemiplegia of Childhood | ORPHA:2131 | ICD-10: G98 | A.I.S.EA - A.I.S.EA Onlus - Associazione Italiana Emiplegia Alternante | Italy | www.facebook.com/aiseaonlus | www.aiseaonlus.org | Paola Bona | info@aiseaonlus.org |
IAHCRC | Italy | https://www.facebook.com/iahcrc/ | https://www.iahcrc.net/ | Rosaria | info@iahcrc.net | ||
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman Syndrome Alliance | Europe | https://www.facebook.com/AngelmanSyndromeAlliance/ | https://angelmanalliance.org/index.php/contact | Betty Willemsen | info@angelmanalliance.eu |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Associazione Angelman Onlus | Italy | https://www.facebook.com/Associazione-Angelman-264454530297881/ | www.associazioneangelman.it | Roberta Martinelli | associazioneangelman@gmail.com |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Sindrome de Angelman | Spain | https://www.facebook.com/asaangelman/?fref=ts | http://www.angelman-asa.org | Joseba Antxustegi | info@angelman-asa.org |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Syndrome Angelman France | France | https://www.facebook.com/Syndrome.Angelman.France/?fref=ts | http://www.syndromeangelman-france.org/ | syndromeangelmanfrance@orange.fr | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | France | https://www.facebook.com/syndrome.angelman.afsa/timeline/ | http://www.angelman-afsa.org | contact@angelman-afsa.org | ||
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angel | Portugal | https://www.facebook.com/AngelmanPT/ | http://www.angel.pt | geral@angel.pt | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Nina Foundation | Nethelands | https://www.facebook.com/groups/377953913011/ | https://ninafoundation.eu/index.php | info@ninafoundation.eu | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman UK | UK | https://www.facebook.com/AngelmanUK/ | http://angelmanuk.org | support@angelmanuk.org | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman Syndrome Ireland | Ireland | https://www.facebook.com/angelmansyndromeireland | http://www.angelman.ie/ | admin@angelman.ie | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman Syndroom | Belgium | https://www.facebook.com/Angelmansyndroom | https://www.angelmansyndroom.be/ | post@angelmansyndroom.be | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelamn Syndroom Netherland | Netherlands | https://www.angelmansyndroom.nl/ | info@angelmansyndroom.nl | ||
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Austria | https://www.facebook.com/angelmanverein | http://www.angelman.at/forschung/ | Yvonne Otzelberger | info@angelman.at | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman Ukraine | Ukraine | https://www.facebook.com/genofond.future/ | https://www.genefund-future.com.ua/ | genofond.future@gmail.com | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Hungary | https://www.facebook.com/angelman.hu/ | http://angelman.hu/ | angelmanalapitvany@gmail.com | ||
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Asgent | Czech Republic | https://www.facebook.com/asgent.org | https://asgent.org/en/ | info@asgent.org | |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Angelman e.V. | Germany | https://www.facebook.com/Angelman.Elternverein | https://angelman.de/ | Holger Mueller | as-info@angelman.de |
Angelmans Syndrome | ORPHA:72 - ICD-10: Q93.5 | Orsa | Italy | https://www.facebook.com/sindromediangelman/?fref=ts | https://www.sindromediangelman.org | Prisco Tommaso | info@sindromediangelman.org |
CDKL5 | ORPHA:1934 | CDKL5 Insieme verso la cura | Italy | https://www.facebook.com/cdkl5insiemeversolacura | http://www.cdkl5insiemeversolacura.it | Omar Fumagali | soci.cdkl5@gmail.com |
CDKL5 | ORPHA:1934 | CDKL5 UK | UK | https://www.facebook.com/CDKL5UK | http://curecdkl5.org.uk/ | Carole Anne | carolanne@cdkl5uk.org |
CDKL5 | ORPHA:1934 | ASSOCIAZIONE CDKL5 | Italy | http://www.cdkl5.org/ | Franceschetti Emanuela | info@cdkl5.org | |
CDKL5 | ORPHA:1934 | CDKL5 Alliance Francophone | France | https://www.facebook.com/CDKL5.fr | http://cdkl5.fr | Sarah MORISSEAU | contact@cdkl5.fr |
CDKL5 | ORPHA:1934 | CDKL5 Deutschland e.V. | Germany | https://www.facebook.com/CDKL5DeutschlandOesterreichSchweiz/ | https://www.cdkl5-verein.de/ | Patrick BAGER | info@cdkl5-verein.de |
CDKL5 | ORPHA:1934 | Spain | https://www.facebook.com/profile.php?id=100063533475207 | https://aacdkl5.org/ | info@aacdkl5.org | ||
CDKL5 | ORPHA:1934 | CDKL5 Austria | Austria | https://www.facebook.com/cdkl5austria/ | http://cdkl5.at | Christoph Gadermayr | gademayr@immoadd.at |
CDKL5 | ORPHA:1934 | CDKL5 Ireland | Ireland | https://www.facebook.com/cdkl5irl/ | cdkl5ireland@gmail.com | ||
CDKL5 | ORPHA:1934 | CDKL5 Nederland | Netherlands | https://www.facebook.com/groups/555857924496537/ | http://www.cdkl5.nl/ | pam@cdkl5.nl | |
CDKL5 | ORPHA:1934 | CDKL5 Slovakia | Slovakia | https://www.facebook.com/CDKL5Slovakia | http://www.cdkl5.sk/ | info@cdkl5.sk, | |
CDKL5 | ORPHA:1934 | Loulou Foundation | UK | https://www.facebook.com/louloufoundation | https://www.louloufoundation.org/ | contact@louloufoundation.org | |
CDKL5 | ORPHA:1934 | CDKL5 Georgia | Georgia | https://www.facebook.com/CDKL5GE | http://gsiem.ge | cdkl5georgia@gmail.com | |
CDKL5 | ORPHA:1934 | CDKL5 Russia | Russia | https://www.facebook.com/groups/CDKL5Russia/about | cdkl5russia@gmail.com | ||
CDKL5 | ORPHA:1934 | CDKL5 Portugal | Portugal | https://www.facebook.com/cdkl5portugal/about | jpvieira88@gmail.com | ||
CDKL5 | ORPHA:1934 | Switzerland | https://www.facebook.com/cdkl5suisse | https://www.cdkl-5.ch/fr.shtml | Patric BENZ | kontakt@cdkl-5.ch | |
Cerebral cavernous malformation | 221061 | France | https://www.facebook.com/associationsurlescavernomescerebraux/ | http://association-cavernome-cerebral.e-monsite.com/ | Christian GRANDET | cgrandet@orange.fr | |
Cerebral cavernous malformation | 221061 | Germany | https://www.facebook.com/angiodysplasie | https://www.angiodysplasie.de | info@angiodysplasie.de | ||
Cerebral cavernous malformation | 221061 | ANACC Onlus - Associazione Nazionale Angioma Cavernoso Cerebrale | Italy | https://www.facebook.com/AngiomaCavernosoCerebraleLaCommunity | https://www.anaccaps.org | Rita TREGLIA | presidente@anacconlus.org |
Cerebral cavernous malformation | 221061 | Spain | https://www.facebook.com/cavernomas | https://cavernomas.org/ | info.cavernomas@gmail.com | ||
Cerebral cavernous malformation | 221061 | Cavernous Angioma Sweden (CASE) | Sweden | https://www.facebook.com/CavernostAngiomSverige.CASE | https://www.cavernostangiomsverige.org/ | Jana BERGHOLTZ | info@cavernostangiomsverigr.org |
Cerebral cavernous malformation | 221061 | Cavernoma Alliance UK | UK | https://www.facebook.com/CavernomaAllianceUK | https://cavernoma.org.uk/ | Lynn LADBROOK | hello@cavernoma.org.uk |
Cerebral cavernous malformation | 221061 | Cavernoma Ireland | Ireland | https://www.facebook.com/profile.php?id=100069352683815 | cavernomaireland@gmail.com | ||
Cerebral cavernous malformation | 221061 | Cavernoma Portugal | Portugal | https://www.facebook.com/CavernomaPortugal/ | https://www.cavernomaportugal.pt | info@cavernoma.pt | |
CLCN4-related X-linked intellectual disability syndrome | Cure CLCN4 | UK | https://www.facebook.com/CureCLCN4/ | https://cureclcn4.org/ | info@cureclcn4.org | ||
CSWSS | ORPHA:725 | Spain | https://www.facebook.com/sindromePOCS | https://sindromepocs.org/que-es-el-pocs/ | info@sindromepocs.org | ||
Dravet Syndrome | ORPHA: 33069 | Dravet Italia Onlus | Italy | https://www.facebook.com/DravetItaliaOnlus/ | http://www.dravet-italia.org | Isabella Brambilla | info@dravet-italia.org |
Dravet Syndrome | ORPHA: 33069 | Dravet Syndrome European Federation | Europe | https://www.facebook.com/draveteurope/ | http://dravet.eu | Simona Borroni | info@dravet.eu |
Dravet Syndrome | ORPHA: 33069 | Gruppo Famiglie Dravet | Italy | https://www.facebook.com/GruppoFamiglieDravetOnlus/ | https://www.sindromedidravet.org | Simona Borroni | gruppofamiglie@sindromedidravet.org |
Dravet Syndrome | ORPHA: 33069 | Stichting Dravetsyndroom Nederland Vlaanderen | Netherlands | https://www.facebook.com/profile.php?id=100068743472932 | https://www.dravetsyndroom.eu/ | Myra De Groot | info@dravetsyndroom.eu |
Dravet Syndrome | ORPHA: 33069 | Alliance Syndrome de Dravet | France | https://www.facebook.com/alliancesyndromededravet | https://www.dravet.fr | Anne Sophie Hallet | contact@dravet.fr |
Dravet Syndrome | ORPHA: 33069 | Swiss Dravet Syndrome Association | Switzerland | https://www.facebook.com/dravetch | https://dravet.ch/der-wegweiser-ist-da | Renata Heusser | info@dravet.ch |
Dravet Syndrome | ORPHA: 33069 | DRAVET-SYNDROM e.V. | Germany | https://www.facebook.com/dravet.de/ | https://dravet.de/ | Nicole Lamla | info@dravet.de |
Dravet Syndrome | ORPHA: 33069 | Dravet sindrom Hrvatska | Croatia | https://www.facebook.com/DSHrvatska/?tn-str=k*F | https://dravet-sindrom-hrvatska.hr/ | Irena Bibic | info@dravet-sindrom-hrvatska.hr |
Dravet Syndrome | ORPHA: 33069 | Dravet syndrome UK | UK | https://www.facebook.com/dravetsyndromeuk/ | https://www.dravet.org.uk/ | Galia Wilson | info@dravet.org.uk |
Dravet Syndrome | ORPHA: 33069 | Portugal | https://www.facebook.com/dravetportugal/ | https://dravet.pt/ | Sara Prates | geral@dravet.pt | |
Dravet Syndrome | ORPHA: 33069 | Dravet.pl | Poland | https://www.facebook.com/zespol.dravet/ | http://www.dravet.pl | dravet@dravet.pl | |
Dravet Syndrome | ORPHA: 33069 | DRAVET Syndrome Association Sweden | Sweden | https://www.dravetssweden.se/ | Jennie Bergman | info@dravetssweden.se | |
Dravet Syndrome | ORPHA: 33069 | Spain | https://www.facebook.com/Fundacion.Sindrome.de.Dravet/ | https://dravetfoundation.eu/ | informacion@dravetfoundation.eu | ||
Dravet Syndrome | ORPHA: 33069 | Epilepsiforbundet Dravet syndrom | Norway | https://www.facebook.com/dravet.no | http://dravet.no/ | Susanne Loyland | dravet@epilepsi.no |
Dravet Syndrome | ORPHA: 33069 | Apoyo Dravet | Spain | https://www.facebook.com/apoyodravet/ | http://www.apoyodravet.eu/ | Luisimi Aras | contacto@apoyodravet.eu |
Dravet Syndrome | ORPHA: 33069 | Dravet sindrom Srbija | Serbia | https://www.facebook.com/dravetsindromsrbija/ | Irena Letmanji Chifor | irenachifor@gmail.com | |
Dravet Syndrome | ORPHA: 33069 | Dravet Denmark | Denmark | https://www.facebook.com/dravetdk/ | https://dravet.dk | postkasse@dravet.dk | |
Dravet Syndrome | ORPHA: 33069 | Dravet syndrome Ireland | Ireland | https://www.facebook.com/dravetsyndromeireland/ | https://www.dravetsyndromeireland.org/ | info@dravetsyndromeireland.org | |
Encephalitis | ORPHA:97275 | Encephalitis Society | UK | https://www.facebook.com/EncephalitisSociety/ | www.encephalitis.info | mail@encephalitis.info | |
FOXG1 syndorme | ORPHA:561854 | FoxG1 Deutschland e.V. | Germany | https://www.facebook.com/foxg1de | https://www.foxg1.de/ | info@foxg1.de | |
FOXG1 syndorme | ORPHA:561854 | association FOXG1 France | France | https://www.facebook.com/FOXG1France/ | https://foxg1france.fr/ | contact@foxg1france.fr | |
ORPHA:592564 | GNAO1 tuki ry | Finland | http://www.gnao1.fi/ | info@gnao1.fi | |||
ORPHA:592564 | Famiglie GNAO1 | Italy | https://www.facebook.com/FamiglieGNAO1/ | https://gnao1.it/ | info@gnao1.it | ||
ORPHA:592564 | Stichting GNAO1 NL | Netherlands | https://www.facebook.com/StichtingGNAO1NL | https://gnao1.nl/ | info@gnao1.nl | ||
ORPHA:592564 | Spain | http://gnao1.es/ | asociaciongnao1@gmail.com | ||||
ORPHA:592564 | Mondo GNAO1 UK | UK | https://www.facebook.com/mondognao1uk/ | https://mondo-uk.co.uk/ | Emma MARKS | info@mondo-uk.co.uk | |
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Associazione Italiana GLUT1 | Italy | https://www.facebook.com/associazioneitalianaglut1/ | https://www.glut1.it | MONICA LUCENTE Presidente e RAPPRESENTANTE EPAG EPICARE | |
Camerini Alessandra" | famiglie@glut1.it | ||||||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | France | https://asdglut1.wixsite.com/asdglut1 | Magali SORRET | asdglut1@gmail.com | ||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Germany | http://glut1.de/de.html | info@glut1.de | |||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Glut1 Deficiency UK - Irish Contact Point | Ireland | hello@glut1deficiency.org.uk | |||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Foreningen for GLUT1 ds | Norway | https://www.facebook.com/groups/228127133942975/?ref=bookmarks | https://www.glut1ds.no/ | John RIVELSRUD | post@glut1ds.no |
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Spain | https://www.facebook.com/aglutinateGLUT1/ | https://aglutinate.org/ | info@aglutinate.org | ||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | Spain | https://asglutdiece.org/ | info@asglutdiece.org | |||
Glucose transporter type 1 deficinecy GLUT1 | ORPHA:71277 | GLUT 1 Deficiency UK | UK | https://www.facebook.com/Glut1DeficiencyUK/ | https://glut1deficiency.org.uk/ | hello@glut1deficiency.org.uk | |
Hypothalamic Hamartoma | ORPHA:86906 | Hope for Hypothalamic Hamartomas | UK | https://www.facebook.com/hopeforhhuk | www.hopeforhh.org | Emma Nott | infouk@hopeforhh.org |
KCNq2 | ORPHA:439218 | KCNQ2 France Developpement | France | https://www.facebook.com/kcnq2France/ | Sabrina HAMOT | kcnq2francedev@gmail.com | |
KCNq2 | ORPHA:439218 | Spain | https://www.facebook.com/Kcnq2/ | https://kcnq2espana.com/ | Tanit DE BENITO TRENAS | kcnq2spain@gmail.com | |
KCNq2 | ORPHA:439218 | KCNQ2 e.V. | Germany | https://www.facebook.com/KCNQ2-eV-222465818324480 | https://kcnq2.de/ | info@kcnq2.de | |
KCNq2 | ORPHA:439218 | European KCNQ2 Association | EU | https://www.europeankcnq2association.com | europeankcnq2association@gmail.com | ||
Lennox Gastaut syndrome | ORPHA:2382 | Associazione Famiglie LGS Italia | Italy | https://www.facebook.com/LGSITALIA/ | https://www.associazionelgs.it | Katia Santoro | info@associazionelgs.it |
Lissencephaly | ORPHA:95232 | Germany | https://www.facebook.com/Lissevkontakt/ | https://lissenzephalie.de/ | Burkhard PROPF | kontakt@lissenzephalie.de | |
LKS | ORPHA:98818 | Spain | https://www.facebook.com/landaukleffner/ | slkpenelope@gmail.com | |||
LKS | ORPHA:98818 | FOLKS | UK | https://www.facebook.com/FamiliesOfLandauKleffnerSyndrome | info@friendsoflks.com | ||
Migrating partial seizures of infancy | Spain | https://www.facebook.com/sindromePOCS | https://sindromepocs.org/que-es-el-pocs/ | info@sindromepocs.org | |||
Mitochondrial Diseases | ORPHA:2598 | Association contre les Maladies Mitochondriales | France | https://www.facebook.com/association.ammi/?ref=page_internal | https://www.association-ammi.org/ | assoammi@gmail.com | |
PCDH19 | ORPHA:101039 | Insieme per la ricerca PCDH19 - Onlus | Italia | https://www.facebook.com/insiemepcdh19/ | http://www.pcdh19research.org | Francesca Squillante - Fabrizio Mistretta | insiemepcdh19@yahoo.it |
PCDH19 | ORPHA:101039 | PCDH19 France | France | https://www.facebook.com/pcdh19france | https://pcdh19france.fr/ | pcdh19france@gmail.com | |
PCDH19 | ORPHA:101039 | Spain | https://www.facebook.com/profile.php?id=100064857304148 | ||||
Rett syndrome (MECP2) | ORPHA:778 | Rett Syndrome Europe | Europe | https://www.facebook.com/Rett-Syndrome-Europe-232940826831244/timeline | http://www.rettsyndrome.eu | info@rettsyndrome.eu | |
Rett syndrome (MECP2) | ORPHA:778 | Associazione per la Ricerca sulla Sindrome di Rett - ONLUS | Italy | https://www.facebook.com/prorettricerca/ | https://prorett.org | Rita Bernardelli | segreteria@prorett.org |
Rett syndrome (MECP2) | ORPHA:778 | AIRETT - ASSOCIAZIONE ITALIANA SINDROME DI RETT | Italy | https://www.airett.it | Lucia Dovigo | direttivo@airett.it | |
Rett syndrome (MECP2) | ORPHA:778 | Portugal | https://www.facebook.com/ANPAR.SindromeRett.Portugal/ | https://www.anpar.pt/ | Sandra Madeira | anparett@gmail.com | |
Rett syndrome (MECP2) | ORPHA:778 | Spain | https://www.facebook.com/rett.spain | http://www.rett.es/ | info@rett.es | ||
Rett syndrome (MECP2) | ORPHA:778 | Spain | https://www.facebook.com/RettCat/ | https://rett.cat/ | secretaria.rett@gmail.com | ||
Rett syndrome (MECP2) | ORPHA:778 | France | https://www.facebook.com/AFSRett/ | http://www.afsr.fr/ | contact@afsr.fr | ||
Rett syndrome (MECP2) | ORPHA:778 | Belgische Rett Syndroom Vereniging v.z.w | Belgium | http://www.rettsyndrome.be/ | brsv@rettsyndrome.be | ||
Rett syndrome (MECP2) | ORPHA:778 | Nederlandse Rett Syndroom Vereniging | Netherlands | https://www.facebook.com/RettSyndroomNL | http://www.rett.nl/ | info@rett.nl | |
Rett syndrome (MECP2) | ORPHA:778 | Rett UK | UK | https://www.facebook.com/RettUK/ | http://www.rettuk.org/ | info@rettuk.org | |
Rett syndrome (MECP2) | ORPHA:778 | Reverse Rett | UK | https://www.facebook.com/reverserett/ | http://reverserett.org.uk/ | info@reverserett.org.uk | |
Rett syndrome (MECP2) | ORPHA:778 | The Rett Syndrome Association of Ireland | Ireland | https://www.facebook.com/RettSyndromeIreland | http://www.rettsyndrome.ie/ | info@rettsyndrome.ie | |
Rett syndrome (MECP2) | ORPHA:778 | Iceland | http://www.rettenglar.yolasite.com/ | ff@liu.is | |||
Rett syndrome (MECP2) | ORPHA:778 | Syndrome de Rett: Luxembourg | Luxembourg | Nina Kocan | ninakocan@hotmail.com | ||
Rett syndrome (MECP2) | ORPHA:778 | Norsk Forening for Rett Syndrom | Norway | http://www.rettsyndrom.no/ | Hilde Friis | post@rettsyndrom.no | |
Rett syndrome (MECP2) | ORPHA:778 | RSIS (Rett Syndrom i Sverige) | Sweden | http://www.rsis.se/ | info@rsis.se | ||
Rett syndrome (MECP2) | ORPHA:778 | Rett ry | Finland | https://www.facebook.com/profile.php?id=100064379542013 | https://rettfinland.fi/ | Kirsi Peltonen | kirsi.peltonen@rettfinland.fi |
Rett syndrome (MECP2) | ORPHA:778 | Landsforeningen Rett Syndrom | Denmark | http://www.rett.dk/ | Martin Jagd Nielsen | rett@rett.dk | |
Rett syndrome (MECP2) | ORPHA:778 | Germany | https://www.facebook.com/RettSyndromHilfe | http://www.rett.de/ | info@rett.de | ||
Rett syndrome (MECP2) | ORPHA:778 | Interessen-Gruppe Rett-Syndrom Schweiz | Switzerland | https://www.facebook.com/rettvereinschweiz | http://www.rett.ch/ | Tony & Joanna Snyder | info@rett.ch |
Rett syndrome (MECP2) | ORPHA:778 | Austria | https://www.facebook.com/RettSyndromAustria/ | http://www.rett-syndrom.at/ | kontakt@rett-syndrom.at | ||
Rett syndrome (MECP2) | ORPHA:778 | Poland | https://www.facebook.com/zespol.retta/?fref=ts | http://www.rettsyndrome.pl/ | Pawe? Kwiecie? | info@rettsyndrome.pl | |
Rett syndrome (MECP2) | ORPHA:778 | Czech Republic | https://www.facebook.com/Rett-Community-219730424732417/timeline/ | http://www.rett-cz.com/ | info@rett-cz.com | ||
Rett syndrome (MECP2) | ORPHA:778 | Slovakia | rettsyndrome.sk@gmail.com | ||||
Rett syndrome (MECP2) | ORPHA:778 | Serbia | Maja Pavlovic | kajaprda@yahoo.com | |||
Rett syndrome (MECP2) | ORPHA:778 | RETT ????? | Greece | https://www.facebook.com/profile.php?id=100064325754093 | http://www.rettgreece.gr/ | Nektaria Vazoura | aggeloi_ghs@hotmail.com |
Rett syndrome (MECP2) | ORPHA:778 | Malta | Denis Galea | dgalea@tcsmith.com | |||
Rett syndrome (MECP2) | ORPHA:778 | Cyprus | Petros Konstantinou | bob20v@cytanet.com.cy | |||
Rett syndrome (MECP2) | ORPHA:778 | Bulgaria | Iva Gogova | iva_66@mail.bg | |||
Rett syndrome (MECP2) | ORPHA:778 | Montenegro | Sasa & Sanja Vuksanovic | sasa.vuksanovic.pg@gmail.com | |||
Rett syndrome (MECP2) | ORPHA:778 | North Macedonia | Biljana Vlastimirova | bibizare@gmail.com | |||
Rett syndrome (MECP2) | ORPHA:778 | Hungary | https://www.facebook.com/rettalapitvany/ | http://www.rettszindroma.hu/ | Danijela Szili | rettszindromaalapitvany@gmail.com | |
Rett syndrome (MECP2) | ORPHA:778 | Moldova | Losetchi Doinita-Elena | doinita-elena@mail.ru | |||
Rett syndrome (MECP2) | ORPHA:778 | Ukraine | Elena Khatina | khatinaev1@gmail.com | |||
Rett syndrome (MECP2) | ORPHA:778 | Agotos labdaros ir paramos fondas | Lithuania | https://www.facebook.com/agotos.lt/ | http://www.agotos.lt/ | Laura Kanapieniene | info@agotos.lt |
Rett syndrome (MECP2) | ORPHA:778 | Latvia | Inese Belicka | inese.belicka@inbox.lv | |||
Rett syndrome (MECP2) | ORPHA:778 | Estonia | |||||
Rett syndrome (MECP2) | ORPHA:778 | Belarus | Julia Anashechkina | yulianna081982@mail.ru | |||
Rett syndrome (MECP2) | ORPHA:778 | ?????????? ???????? ????? | Russia | http://www.rettsyndrome.ru/ | Olga Timutsa | rettsyndrome@mail.ru | |
Ring Chromosome 14 | ORPHA:1440 | Ring 14 International | Europe | http://www.ring14.org/eng/250/home/ | dewoody.yssa@ring14.org | ||
Ring Chromosome 14 | ORPHA:1440 | Ring14 Italia Onlus | Italia | https://www.facebook.com/groups/ring14/ | http://www.ring14.org/ita/ | Stefania Azzali | info@ring14.it |
Ring Chromosome 14 | ORPHA:1440 | Ring14 - Spain | Spain | https://www.facebook.com/groups/ring14/ | http://www.ring14.org/es/ | Eva Marin | marin.eva@ring14.es |
Ring Chromosome 14 | ORPHA:1440 | Ring14 - Netherlands | Netherlands | https://www.facebook.com/groups/ring14/ | http://www.ring14.org/nl/ | Shutte Jan | shutte.jan@ring14.nl |
Ring Chromosome 14 | ORPHA:1440 | Ring14 - France | France | https://www.facebook.com/groups/ring14/ | http://www.ring14.org/fr/ | Ingrid Deguisne | deguisne.ingrid@ring14.fr |
Ring Chromosome 14 | ORPHA:1440 | Ring14 - Belgium | Belgium | https://www.facebook.com/groups/ring14/ | Cindy Desssy | ring14belgium@gmail.com | |
Ring Chromosome 20 | ORPHA:1444 | Allison Watson | UK | https://www.facebook.com/Ring20ResearchandSupportUK | http://ring20researchsupport.co.uk/ | Allison Watson | ring20@ring20researchsupport.co.uk |
Ring Chromosome 20 | ORPHA:1444 | Paziente Contatto isabella | Italia | ||||
SCN2A | SCN2A Europe | Europe | https://www.scn2a.eu/ | scn2a@web.de | |||
SCN2A | SCN2A Famiglie in rette | Italy | https://www.facebook.com/SCN2AItalia | https://scn2a-italia.it/ | Stefania Dantone | info@scn2a-italia.it | |
SCN2A | SCN2A UK | UK | https://www.facebook.com/scn2auk/ | info@scn2afamiliesuk.co.uk | |||
SCN2A | SCN2A Georgia | Georgia | https://www.facebook.com/profile.php?id=100069329701001&fref=tag | ||||
SCN8A | ORPHA:442835 | SCN8A Italia | Italy | https://www.facebook.com/scn8aitalia | https://www.scn8a.it/# | info@scn8a.it | |
SCN8A | ORPHA:442835 | SCN8A Europe | Europe | https://www.facebook.com/scn8aeurope | supportgroup@thecutesyndrome.com | ||
SCN8A | ORPHA:442835 | SCN8A UK&Ireland | UK, Ireland | https://www.facebook.com/profile.php?id=100068115247244 | https://www.scn8a.co.uk | SCN8A.ukie@gmail.com | |
SCN8A | ORPHA:442835 | SCN8A France | France | https://www.facebook.com/profile.php?id=100079767607858 | https://www.scn8a.fr/ | scn8a.france@gmail.com | |
SCN8A | ORPHA:442835 | SCN8A Portugal | Portugal | https://www.facebook.com/SCN8APortugal/ | scn8a.portugal@gmail.com | ||
SLC13A5 | Tess Research Foundation | USA (global) | https://www.facebook.com/TESSresearch/ | https://www.tessresearch.org/ | Maria Geslin | info@tessfoundation.org | |
Sturge-Weber syndrome | ORPHA:3205 | France | https://www.facebook.com/Juliaetlesyndromesturgeweber/ | https://www.vanille-fraise.org/ | association@vanille-fraise.org | ||
Sturge-Weber syndrome | ORPHA:3205 | Interessengemeinschaft Sturge-Weber-Syndrom e.V. | Germany | https://www.facebook.com/profile.php?id=100063822548109 | https://www.sturge-weber.de/ | Daniela HITZLER | info@sturge-weber.de |
Sturge-Weber syndrome | ORPHA:3205 | NvWSWs - Nederlandse vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroom | Netherlands | https://www.facebook.com/NvWSWs | https://www.wijnvlek-sturgeweber.nl/ | info@wijnvlek-sturgeweber.nl | |
Sturge-Weber syndrome | ORPHA:3205 | Spain | https://www.facebook.com/AESSW/ | info@sturge-weber.es | |||
Sturge-Weber syndrome | ORPHA:3205 | Sturge-Weber association Sweden (SWS) | Sweden | http://www.sturge-weber.se/ | joacim.stahl@sturge-weber.se | ||
Sturge-Weber syndrome | ORPHA:3205 | Sturge Weber Foundation UK | UK | https://www.facebook.com/SWUKFanPage/ | https://www.sturgeweber.org.uk/ | support@sturgeweber.org.uk | |
Sturge-Weber syndrome | ORPHA:3205 | Sturge Weber Italia | Italy | https://www.facebook.com/Sindrome-di-Sturge-Weber-Italia-502358313141069/ | http://www.sturgeweberitalia.org | Ghiotto Gianluca | info@sturgeweberitalia.org |
STXBP1-related encephalopathy | ORPHA:599373 | Spain | https://www.facebook.com/stxbp1 | https://stxbp1.es/en/ | info@stxbp1.es | ||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | Syngap Elternhilfe e.V. | Germany | https://www.facebook.com/groups/605937599747915/ | http://www.syngap.de/ | Verena SCHMEDER | kontakt@syngap.de | |
SYNGAP1 - synaptic Ras GTPase activating protein 1 | Bridgesyngap (SYNGAP1 support Group)- Irish Contact Point | Ireland | syngap1roi@gmail.com | ||||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | Spain | https://www.facebook.com/profile.php?id=100081547130803 | https://xn--syngap1espaa-khb.es/ | Gonzalo BERMEJO MODINO | info@syngap1.es | ||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | SYNGAP1 Italia | Italy | https://www.facebook.com/syngap1italia | https://www.syngap1.it/ | afsy1.italia@gmail.com | ||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | SYNGAP1 UK | UK | https://syngapuk.org/ | ||||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | SYNGAP1 Portugal | Portugal | https://www.facebook.com/profile.php?id=100068049530734 | syngap1portugal@gmail.com | |||
SYNGAP1 - synaptic Ras GTPase activating protein 1 | Hungary | Joszef Toth | jozseftoth39@gmail.com | ||||
Tuberous sclerosis | ORPHA:805 | TSA- Tuberous sclerosis association | UK | https://www.facebook.com/thetsauk | http://www.tuberous-sclerosis.org | Alison Cooper (Head of research), Jayne Spink (CEO) | admin@tuberous-sclerosis.org |
Tuberous sclerosis | ORPHA:805 | France | https://www.facebook.com/ASTB2015 | https://astb.asso.fr/ | contact@astb.asso.fr | ||
Tuberous sclerosis | ORPHA:805 | Esclerosis Tuberosa Barcelona | Spain | https://www.facebook.com/Esclerosis-tuberosa-barcelona-106722256065406/ | https://esclerosistuberosa.wordpress.com | ||
Tuberous sclerosis | ORPHA:805 | Germany | https://www.facebook.com/TSDeV.org/ | https://www.tsdev.org | info@tsdev.org | ||
Tuberous sclerosis | ORPHA:805 | Associazione Sclerosi Tuberosa | Italy | https://www.facebook.com/groups/360361414135616/ | http://www.sclerosituberosa.org/home/ | info@sclerosituberosa.org | |
Tuberous sclerosis | ORPHA:805 | Austria | http://www.tuberoesesklerose.at/ | info@tuberoesesklerose.at | |||
Tuberous sclerosis | ORPHA:805 | Belgium | https://www.betsc.be/fr/ | info@betsc.be | |||
Tuberous sclerosis | ORPHA:805 | Denmark | https://www.facebook.com/groups/211655862240218/?fref=ts | http://tsdanmark.dk/ | formand@tsdanmark.dk | ||
Tuberous sclerosis | ORPHA:805 | TSC Ireland | Ireland | https://www.facebook.com/TSCIreland/ | https://tscireland.org/ | info@tscireland.org | |
Tuberous sclerosis | ORPHA:805 | Tuberous Sclerosis Foundation | Netherlands | https://www.facebook.com/levenmetTSC/ | https://stsn.nl/ | info@stsn.nl | |
Tuberous sclerosis | ORPHA:805 | Norway | https://www.nfts.no/ | post@nfts.no | |||
Tuberous sclerosis | ORPHA:805 | Stowarzyszenie Chorych Na Stwardnienie Guzowate | Poland | https://www.stwardnienie-guzowate.eu/ | stowarzyszenie.stw.guz@wp.pl | ||
Tuberous sclerosis | ORPHA:805 | A.E.T.N. | Portugal | https://www.facebook.com/esclerosetuberosa/ | https://www.esclerosetuberosa.org.pt/home | info@esclerosetuberosa.org.pt | |
Tuberous sclerosis | ORPHA:805 | Slovakia | https://www.facebook.com/astus.sk/ | https://www.diagnozatsc.sk/ | astus@astus.sk | ||
Tuberous sclerosis | ORPHA:805 | Spain | https://www.facebook.com/asociacionespanoladeesclerosistuberosa/ | http://esclerosistuberosa.org/ | info@esclerosistuberosa.org | ||
Tuberous sclerosis | ORPHA:805 | TSC Servige | Sweden | https://www.facebook.com/tscsverige/ | https://tsc-sverige.se/ | info@tsc-sverige.se | |
Tuberous sclerosis | ORPHA:805 | The All-Ukrainian Association for the Care of Tuberous Sclerosis | Ukraine | https://www.facebook.com/groups/www.tuberoussclerosis.com.ua/ | http://www.tuberoussclerosis.com.ua/ | tscukraine@gmail.com | |
Tuberous sclerosis | ORPHA:805 | Hungarian Foundation for Tuberous Sclerosis | Hungary | https://www.facebook.com/sclerosistuberosa/ | https://www.tsc.hu/ | info@tsc.hu | |
Tuberous sclerosis | ORPHA:805 | ?????????? ??????? ?????????? ????????? | Russia | tsc.rus@gmail.com | |||
West syndrome | ORPHA:3451 | Spain | https://www.facebook.com/fundacionsindromedewest/ | http://www.sindromedewest.org/ | fundacion@sindromedewest.org | ||
West syndrome | ORPHA:3451 | UK Infantile Spasms Trust- UKIST | UK | https://www.facebook.com/UKInfantileSpasmsTrust/ | https://ukinfantilespasmstrust.org/ | ukinfantilespasmstrust@gmail.com | |
West syndrome | ORPHA:3451 | ASSOCIATION DE PARENTS CONCERNES PAR LE SYNDROME DE WEST | France | http://sudwest.free.fr/ | Lucienne LEROY | sudwest@free.fr | |
West syndrome | ORPHA:3451 | LES ENFANTS DE WEST | France | https://www.facebook.com/groups/52683715391/ | https://famwest.hypotheses.org/les-enfants-de-west-2 | Emilie GIRARD | enfantsdewest@hotmail.fr |
Epilepsy sparks | UK | https://www.facebook.com/epilepsysparks/ | https://www.epilepsysparks.com/ | Torie Robinson | info@epilepsysparks.com | ||
EPISTOP, Czech Rebublic | Sarka Kanova | ||||||
Barbara Nicol | barbaranicol170@hotmail.com | ||||||
KCNT1 | KCNT1 / NL | Netherlands | Anita Noordhoff | ||||
FIRES | Association Paratonnerre | France | https://www.facebook.com/AssociationParatonnerre/ | https://associationparatonnerre.org | Association Paratonnerre | associationparatonnerre@yahoo.fr | |
Ketogenic diet | UK | https://www.facebook.com/matthewsfriends/ | https://www.matthewsfriends.org/ | Emma Williams | enq@matthewsfriends.org | ||
Judette | Marie Emmery | ||||||
KCNT1 | Une Etincelle Pour Isaure | France | https://uneetincellepourisaure.com/ | Henry Thelu | contact@uneetincellepourisaure.com | ||
KCNT1 | Valeria Association | Switzerland | https://www.facebook.com/rettevaleria/ | https://www.valeria-association.com/en/ | support@valerias.org | ||
Kinder Epilepsie | www.kinderepilepsie.be | Stefanie De Jonghe | info@kinderepilepsie.be | ||||
GRIN2B | European GRIN2B Association | EU | https://www.facebook.com/grin2beurope/ | http://grin2b.eu/ | Christian Brander | admin@grin2b.eu | |
GRIN2B | Spain | https://www.facebook.com/GRINpatia/ | https://www.grinpatias.org/quienes-somos | Sandra Silva Arrieta | info@grinpatias.org | ||
GRIN2B | European GRIN2B Association | EU | Marita gunn Sandnes | marita@grin2beu.com | |||
GRIN2B | Stichting GRIN syndroom | Netherlands | https://www.facebook.com/groups/202306564791124 | https://grinsyndroom.nl/ | Gilianne | info@grinsyndroom.nl | |
GRIN2B | European GRIN2B Association | EU | Amela Topic | dizzic83@gmail.com | |||
GRIN2A | Grin2A Italia | Italy | https://www.instagram.com/mauriziogrin2aitalia/?hl=it | https://assmgrin2aitalia.it/ | info@assmgrin2aitalia.it | ||
General Epilepsy Associations | Epilepsy Action | UK | https://www.facebook.com/epilepsyaction/ | https://www.epilepsy.org.uk/ | epilepsy@epilepsy.org.uk | ||
General Epilepsy Associations | Epilepsy Society | UK | https://www.facebook.com/EpilepsySociety/ | https://www.epilepsysociety.org.uk/ | helpline@epilepsysociety.org.uk | ||
General Epilepsy Associations | Epilepsy Scotland | UK | https://www.facebook.com/epilepsyscotland/ | https://www.epilepsyscotland.org.uk/ | admin@epilepsyscotland.org.uk | ||
Young Epilepsy | Young Epilepsy | UK | https://www.facebook.com/YoungEpilepsy/ | www.youngepilepsy.org.uk | Nicole Ronson Allalouf | info@youngepilepsy.org.uk | |
Down syndrome related epilepsy | European Down syndrome association | Europe | https://www.facebook.com/edsachannel/ | http://www.edsa.eu/down-syndrome/ | info@edsa.eu | ||
Fragile X related epilepsy | European FRAGILE X Network | Europe | https://www.facebook.com/EuropeanFragileXNetwork | https://fragilex.eu/ | |||
Progressive Myoclonic Epilepsies | AMARMYUL - Association contre la maladie rare myoclonique d'Unverricht-Lundborg | France | http://www.amarmyul.com/index.php | amarmyul@wanadoo.fr | |||
Cavernoma | European Cavernoma Alliance | Europe | https://www.facebook.com/EuropeanCavernomaAlliance/ | https://sites.google.com/cavernostangiomsverige.org/eca/home?pli=1 | |||
Neurotransmiter diseases | Spain | https://www.facebook.com/asoc.deneu/ | https://www.deneu.org/ | info@deneu.org | |||
Brain injury | Headway | UK | https://www.facebook.com/headwayuk | https://www.headway.org.uk/ | enquiries@headway.org.uk | ||
Metabolic diseases incluing ones that cause epilepsy | Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS" | Cyprus | https://www.aspidazois.com/en/ | info@aspidazois.com |
For more information on rare diseases and rare epilepsies associations and support, check out EURORDIS.
