Full Members

Full EPF members consist of:

1. pan-European disease-specific patients’ organisations and
2. national coalitions of patients organisations which represent at least 10 different disease groups.

Full membership of EPF shall require the following criteria:

• Legitimacy: EPF member organisations should have statutes registered in one of the member states of the European Union. If the applicant organisation is not registered in an EU Member State, additional information needs to be provided demonstrating EU focus and activities.
• Representation: EPF member organisations should have members of their own in more than half of the member states of the European Union.
• Democracy: EPF member organisations should have governing bodies, which are elected by their members, who shall be patients, their carers, or their elected representatives.
• Accountability and Consultation: Statements and opinions of EPF member organisations should reflect the views and opinions of their members and consultation procedures with those members should be put in place.
• Transparency: EPF member organisations should generally disclose their sources of funding and generally make available their audited financial accounts.

Please have a look at the list of our full members bellow:
 

Organization	Representitive	Address	Contacts
Alzheimer Europe	Jean Georges	145, route de Thionville L-2611 Luxembourg	Tel: +352-29 79 70 Fax: +352-29 79 72 info [at] alzheimer-europe.org www.alzheimer-europe.org
Age Related Macular Degeneration (AMD) Alliance International	Rainald von Gizycki	Lutherstraße 4-6 D-61231 Bad Nauheim	Tel.: +49 6032 30 66 90 Fax: +49 6032 30 66 91 rainald.vongizycki [at] charite.de www.amdalliance.org
Collectif inter associatif Sur la Santé (CISS)	Christian Saout	5 rue du Général Bertrand 75007 Paris	Tel: + 33 1 40 56 01 49 Fax: + 33 1 47 34 93 27 secretariat [at] leciss.org president [at] leciss.org www.leciss.org
Council of Representatives of Patients’ organizations of Lithuania (LPOAT)	Vida Augustinienė	Gedimino av. 28/2 – 404 LT 01104 Vilnius Lithuania	Tel: + 37 05 26 20 783 Fax: + 37 05 26 10 639 info [at] dia.lt info [at] pacientutaryba.lt www.pacientutaryba.lt
The Estonian Chamber of Disabled People	Meelis Joost	Toompuiestee 10 10137 Tallinn Estonia	Tel: +3725014164 Tel: +37256648265 epikoda[at] gmail.com meelis.joost[at] gmail.com www.epikoda.ee
EUROPA DONNA - The European Breast Cancer Coalition	Susan Knox	Ministry of Health Villa Louvigny L-2120 Luxembourg	Tel. +39 02 36592280 Fax. +39 02 36592284 Piazza Amendola, 3 20149 Milan - Italy susan.knox [at]europadonna.org www.europadonna.org
European Alliance of neuro-Muscular Disorders Association - EAMDA	Dr. Peter Streng	Lt. Gen. Van Heutszlaan 6 3743 JN BAARN The Netherlands	Tel: +31 (0)35 5480 480 Fax: +31 (0)35 5480 499 peter.streng[at]vsn.nl www.vsn.nl
European Federation of Association of Families of Mentally Ill People - EUFAMI	Mrs. Inger Nilsson	100, Diestsevest 3000 Leuven Belgium	Tel: +32 16 74 50 42 Fax: +32 16 74 50 49 inlen.nilsson[at]swipnet.se www.eufami.org
European Federation of Allergy and Airways Diseases Patients' Associations - EFA	Susanna Palkonen	35, Rue de Congrès 1050 Brussels Belgium	Tel: +32 2 227 27 12 Fax: +32 2 218 31 41 susanna.palkonen [at] efanet.org www.efanet.org
European Federation of Crohn's and Ulcerative Colitis Associations - EFCCA	Micke Lindholm	Gropmorsvagen 28 10520 Tenala Finland	Tel: +358 19 24 506 00 Fax: +358 19 24 508 60 micke.lindholm[at]pp.inet.fi rod.mitchell[at]infodor.fsnet.co.uk www.efcca.org
European Federation of Homeopathic Patients' Associations	Jacques Hirsch	Clos du Cheval d'Argent, 9 1050 Brussels Belgium	Phone: +32 2 672 33 51 Fax: +32 2 672 13 63 jacques.hirsch[at]brutele.be www.efhpa.com
European Federation of Associations of Patients with Haemochromatosis	Jean Rialland	1 Bld Jeanne d'Arc, 35000 Rennes France	Tel.: +33299870515 jean.rialland [at] club-internet.fr www.european-haemochromatosis.eu
European Genetic Alliances Network - EGAN	Cor Oosterwijk	C/o VSOP - Dutch Genetic Alliance Vredehofstraat 31 3761 HA Soestdijk The Netherlands	Tel: +31 35 603 4040 Fax: +31 35 602 7440 egan[at]egan.eu c.oosterwijk [at] vsop.nl www.egan.eu
European Heart and Lung Transplant Federation	David Walker	513 Victoria Road, South Ruislip Middlesex HA4 OHA, UK	Tel: (+44) 20 8845 4113 Fax: (+44) 7737 462731 walker_david8 [at] sky.com www.ehtf.info
European Infertility Alliance	Helen Browne	c/- NISIG Box No. 131 Togher Cork Ireland	Tel: +353 8779 75 058 eia [at] icsi.ws www.icsi.ws/regionalalliances
European Kidney Patients' Federation - CEAPIR	Timo Nerkko	Käskynhaltijantie 14 A 4, FI-00640 Helsinki, Finland	Tel: +358 50 559 3367 timo.nerkko [at] ceapir.org www.ceapir.org
European Men's Health Forum	Erick Savoye	Rue de l'Industrie 11 1000 Brussels Belgium	Tel: +32 2 234 30 58 Fax: +32 2 230 33 00 office [at] emhf.org www.emhf.org
European Multiple Sclerosis Platform	Christoph Thalheim	Rue Auguste Lambiotte 144/8 B-1030 Brussels Belgium	Tel: +32 2 305 80 12 Fax: +32 2 305 80 11 ms-in-europe [at] pandora.be www.ms-in-europe.org
European Network of (ex)users and survivors of psychiatry (ENUSP)	Peter Lehmann	Zabel-Krüger-Damm 183 13469 Berlin Germany	Tel: +49 30 85963706 (Mo, We & Fr, 10 a.m. - 4 p.m. Central European time) Fax: +49 30 40398752 info [at] enusp.org info [at] peter-lehmann.de www.enusp.org
EURORDIS European Organisation for Rare Diseases	Anders Olauson	c/o Plateforme Maladies Rares 102, rue Didot 75014 PARIS France	Tel: +33 1 56 53 52 10 Fax: +33 1 56 53 52 15 anders.olauson [at] agrenska.se ariane.weinman [at] eurordis.org www.eurordis.org
Federation of Polish Patients	Tomasz Szelagowski	Gagarina Street 7, PL 00-735 Warsaw, Poland	Tel: +48 22 84 11 067 Fax: +48 22 72 00 709 Mobile: +48 665 18 24 34 t.szelagowski [at] federacjapp.pl www.federacjapp.pl
Foro Español de Pacientes	Albert Jovell	Casa Convalescència - UAB C/ Sant Antoni Maria Claret, 171 08041 Barcelona	Tel: + 34 93 433 50 76 Fax: + 34 93 433 5036 albert.jovell [at] uab.es fep.webpacientes [at] uab.es www.webpacientes.org/fep
GAMIAN Europe Global Alliance of Mental Illness Advocacy Networks	Guadalupe Morales	C.E.O - Richmond Foundation- 9 Valletta Road, Mqabba ZRQ 08, Malta	Tel: 619 07 31 12; 91 356 78 73 Fax.: 91 361 52 73 guadalupemorales [at] mundobipolar.org www.gamian-europe.org
International Diabetes Federation - Region Europe	Lex Herrebrugh	Regional office Avenue Emile De Mot 19 B-1000 Brussels - Belgium	Tel : +32 2 537 1889 Fax : + 32 2 537 1981 info [at] idf-europe.org www.idf-europe.org
International Patient Organisation for Primary Immunodeficiencies IPOPI	David Watters	Firside Main Road Downderry PL11 3LE UK	Tel/Fax: +44 1503 250 668 Mobile: +44 7736 366 137 david [at] ipopi.org www.ipopi.org
National Voices	Jeremy Tailor	202 Hatton Square, 16 Baldwins Gardens London EC1N 7RJ United Kingdom	Tel: +44 207 813 3637 Fax: +44 207 813 3640 info [at] ltca.org.uk
LUPUS Europe	lupus-europe.org	Yvonne Norton MBE 8/Legge Lane Coseley, West Midlands UK- WV14 8RQ	Tel: +441902498236 www.lupus-europe.org
Pancyprian Federation Of Patients Associations and Friends	Pavlos Dinglis	P.O.BOX:23966 Nicosia 1687 Cyprus	TTel: + 357-22378539 Fax: + 357-22378381 cardio [at] cytanet.com.cy
Retina Europe	Christina Fasser	Retina International Ausstellungsstrasse 36 8005 Zürich Switzerland	Tel: +41 1 444 10 77 Fax: +41 1 444 10 70 cfasser [at] e-link.ch www.retina-international.org
SUSTENTO The Latvian Umbrella Body For Disability Organization	Marta Kozireva	Nicgales str.26 Riga Latvia	Tel: +371 67594137 Fax: +371 67802546 sustento [at] sustento.lv
Thalassaemia International Federation	Androulla Eleftheriou	P.O. Box 28807, 2083 Strovolos; 31 Ifigeneias Street, 2007 Strovolos, Cyprus	Tel.: +357 22 319 129 Fax: +357 22 314 552 thalassaemia [at] cytanet.com.cy  www.thalassaemia.org.cy

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