Links Úteis
Associação Europeia de Doenças Raras
Orphanet
Estruturas Agregadoras de Associações de Doenças Raras
Portugal
RD Portugal - União das Associações das Doenças Raras de Portugal
raras.pt
unificardoencasraras@gmail.com
Alemanha
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
www.achse-online.de
info@achse-online.de
Antiga República Jugoslava da Macedónia
National Alliance for Rare Disease of R. Macedonia
retkibolesti@gmail.com
Áustria
Pro Rare Austria, Allianz für seltenen Erkrankungen
www.prorare-austria.org
office@prorare-austria.org
Bélgica
Rare Disease Organisation Belgium (RaDiOrg Belgium)
www.radiorg.be
info@radiorg.be
Bulgária
National Alliance of People with Rare Diseases (NAPRD)
www.rare-bg.com
tomov@raredis.org
Chipre
Cyprus Alliance for Rare Disorders (CARD)
http://raredisorderscyprus.com/
card@raredisorderscyprus.com
Croácia
Rare Diseases Croatia
www.rijetke-bolesti.hr
rijetke.bolesti@gmail.com
Dinamarca
Rare Diseases Denmark (Sjaeldne Diagnoser)
http://www.sjaeldnediagnoser.dk/
mail@sjaeldnediagnoser.dk
Eslováquia
Slovak Alliance of Rare Diseases
http://www.sazch.sk/
info@sazch.sk
Espanha
FEDER - Federación Española de Enfermedades Raras
www.enfermedades-raras.org
administrativodireccion@enfermedades-raras.org
Federação da Rússia
National Association of Patients with Rare Diseases '"GENETICA"
www.nacgenetic.ru
nacgenetic@mail.ru
Russian Association of Rare Diseases
rare-diseases.ru
vooz@bk.ru
Finlândia
HARSO-Rare Disease Alliance Finland
www.harso.fi
secretary@harso.fi
França
Alliance Maladies Rares
French Rare Diseases Alliance
www.alliance-maladies-rares.org
alliance@maladiesrares.org
Grécia
Greek Alliance for Rare Disease (PESPA)
www.pespa.gr
gr-pespa@otenet.gr
Holanda
VSOP - Vereniging Samenwerkende Ouder En Patiëntenorganisaties
www.vsop.nl
vsop@vsop.nl
Hungria
Rare Diseases Hungary - RIROSZ
www.rirosz.hu
pogany@rirosz.hu
Irlanda
Rare Diseases Ireland
http://rdi.ie/
info@rdi.ie
Itália
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org
segreteria@uniamo.org
Letónia
Latvian Alliance for Rare Diseases
https://retasslimibas.lv/
alianse@retasslimibas.lv
Luxemburgo
ALAN - Maladies Rares Luxembourg
www.alan.lu
info@alan.lu
Polónia
Polish National Forum on the Treatment of Orphan Diseases - ORPHAN
www.rzadkiechoroby.pl
sekretariat@rzadkiechoroby.pl
Reino Unido
Genetic Alliance UK
www.geneticalliance.org.uk
contactus@geneticalliance.org.uk
República Checa
Rare diseases Czech Republic (Česká asociace pro vzácná onemocnění (ČAVO))
http://vzacna-onemocneni.cz
cavo@vzacna-onemocneni.cz
Roménia
Romanian National Alliance for Rare Diseases (RONARD)
www.bolirareromania.ro
office@bolirareromania.ro
Sérvia
National Organization for Rare Diseases
www.norbs.rs
office@norbs.rs
Suécia
Rare Diseases Sweden (Riksförbundet Sällsynta Diagnoser)
www.sallsyntadiagnoser.se
info@sallsyntadiagnoser.se
Suíça
Proraris
www.proraris.ch
contact@proraris.ch
Ucrânia
Non-governmental Organization "Rare Diseases of Ukraine"
https://www.facebook.com/orphandisua
kuleshatatiana@ukr.net
