EU Collaborating partners
EUROPLAN 2012-2015
Austria
Gesundheit Österreich GmbH
Vienna
Phone +43151561-288
www.goeg.at
florian.bachner@goeg.at
Gesundheit Österreich GmbH
Vienna
Phone +43151561-367
www.goeg.at
till.voigtlaender@goeg.at till.voigtlaender@meduni-wien.ac.at
Gesundheit Österreich GmbH
Vienna
Phone +43151561-259
www.goeg.at
joy.ladurner@goeg.at
Medizinische Universität Wien
Vienna
Phone +43140400-5774
www.meduniwien.ac.at/homepage/homepage/en/
ursula.unterberger@meduniwien.ac.at
Gesundheit Österreich GmbH
Vienna
Phone +43151561-362
www.goeg.at
isabel.stadler@goeg.at
Gesundheit Österreich GmbH
Vienna
Phone +43151561-338
www.goeg.at
alexandra.sauer@goeg.at
Gesundheit Österreich GmbH
Vienna
Phone +43151561-161
www.goeg.at
claudia.habl@goeg.at
Florian BACHNER
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-288
www.goeg.at
florian.bachner@goeg.at
Till VOIGTLAENDER
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-367
www.goeg.at
till.voigtlaender@goeg.at till.voigtlaender@meduni-wien.ac.at
Joy LADURNER
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-259
www.goeg.at
joy.ladurner@goeg.at
Ursula UNTERBERGER
Medical University of ViennaMedizinische Universität Wien
Vienna
Phone +43140400-5774
www.meduniwien.ac.at/homepage/homepage/en/
ursula.unterberger@meduniwien.ac.at
Isabel STADLER
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-362
www.goeg.at
isabel.stadler@goeg.at
Alexandra RAMSSL-SAUER
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-338
www.goeg.at
alexandra.sauer@goeg.at
Claudia HABL
Austrian Health InstituteGesundheit Österreich GmbH
Vienna
Phone +43151561-161
www.goeg.at
claudia.habl@goeg.at
Belgium
www.collegeoncologie.be
saskia.vandenbogaert@health.belgium.be
Saskia VAN DEN BOGAERT
Federal Public Service of Public Healthwww.collegeoncologie.be
saskia.vandenbogaert@health.belgium.be
Bulgaria
bapes.raredis.org/
stefanov@raredis.org
drrtincheva@hotmail.com
Rumen STEFANOV
Bulgarian Association for Promotion of Education and Science - (BAPES)bapes.raredis.org/
stefanov@raredis.org
Radka Stefanova TINCHEVA-YORDANOVA
National Advisory Council on rare diseasesdrrtincheva@hotmail.com
Croatia
Zagreb
Phone +385 1 4600107
www.kdb.hr
ingeborg.barisic@kdb.hr
Ministarstvo zdravlja Republike Hrvatske (MIZ)
Zagreb
www.zdravlje.hr/
dunja.skoko-poljak@miz.hr
Ministarstvo socijalne politike i mladih (MSPM)
Zagreb
Phone +385 1 4698 464
www.mspm.hr/
anica.jezic@mzss.hr
Klinicki bolnicki centar Zagreb (KBCZG) Zagreb
www.kbc-zagreb.hr
zreiner@kbc-zagreb.hr
Zagreb
Phone +385 1 2368 121
www.kbc-zagreb.hr
ibaric@kbc-zagreb.hr
Zagreb
Phone +385 1 4806 431
www.hzzo-net.hr/
maja.vajagic@hzzo.hr
Agencija za lijekove i medicinske proizvode (HALMED) Zagreb
Phone +385 1 4884 313; +385 1 4884 100
www.almp.hr www.halmed.hr
vesna.osrecki@halmed.hr
Hrvatski savez za rijetke bolesti (HSRB) Zagreb
www.rijetke-bolesti.hr
ivkacop@gmail.com
rijetke.bolesti@gmail.com
Hrvatski savez za rijetke bolesti (HSRB) Zagreb
Phone +385 1 2441 393
www.rijetke-bolesti.hr
vlasta@debra-croatia.com
rijetke.bolesti@gmail.com
Ingeborg BARISIC
Children’s University Hospital Zagreb, School of Medicine, University of Zagreb - Klinika za djecje bolesti Zagreb (KDB), Medicinski fakultet Sveučilišta u ZagrebuZagreb
Phone +385 1 4600107
www.kdb.hr
ingeborg.barisic@kdb.hr
Dunja SKOKO-POLJAK
Ministry of Health of the Republic of CroatiaMinistarstvo zdravlja Republike Hrvatske (MIZ)
Zagreb
www.zdravlje.hr/
dunja.skoko-poljak@miz.hr
Anica JEŽIĆ
Ministry of Social Policy and YouthMinistarstvo socijalne politike i mladih (MSPM)
Zagreb
Phone +385 1 4698 464
www.mspm.hr/
anica.jezic@mzss.hr
Zeljko REINER
Clinical Hospital Centre ZagrebKlinicki bolnicki centar Zagreb (KBCZG) Zagreb
www.kbc-zagreb.hr
zreiner@kbc-zagreb.hr
Ivo BARIĆ
University Hospital Center Zagreb, School of Medicine, University of Zagreb - Klinički bolnički centar Zagreb, Medicinski fakultet Sveučilišta u Zagrebu (KBCZG and UZMS, respectively)Zagreb
Phone +385 1 2368 121
www.kbc-zagreb.hr
ibaric@kbc-zagreb.hr
Maja VAJAGIC
Hrvatski zavod za zdravstveno osiguranje (HZZO)Zagreb
Phone +385 1 4806 431
www.hzzo-net.hr/
maja.vajagic@hzzo.hr
Vesna OSREČKI
Agency for Medicinal Products and Medicinal DevicesAgencija za lijekove i medicinske proizvode (HALMED) Zagreb
Phone +385 1 4884 313; +385 1 4884 100
www.almp.hr www.halmed.hr
vesna.osrecki@halmed.hr
Ivka ČOP
Croatian Rare Diseases AssociationHrvatski savez za rijetke bolesti (HSRB) Zagreb
www.rijetke-bolesti.hr
ivkacop@gmail.com
rijetke.bolesti@gmail.com
Vlasta ZMAZEK
Croatian Rare Diseases AssociationHrvatski savez za rijetke bolesti (HSRB) Zagreb
Phone +385 1 2441 393
www.rijetke-bolesti.hr
vlasta@debra-croatia.com
rijetke.bolesti@gmail.com
Cyprus
Ministry of Health - Medical Public Health Services
Nicosia, Cyprus
Tel : +357 22405117, +357 22392740
Fax: +357 22392786
www.moh.gov.cy/
vanast@cing.ac.cy
National Committee for the Cyprus Plan for Rare Diseases
vscoutel@cablenet.com.cy
Violetta Christophidou ANASTASIADOU, MD, PhD
National Committee for the Cyprus Plan for Rare DiseasesMinistry of Health - Medical Public Health Services
Nicosia, Cyprus
Tel : +357 22405117, +357 22392740
Fax: +357 22392786
www.moh.gov.cy/
vanast@cing.ac.cy
Vasilios Scoutellas
Nicosia General HospitalNational Committee for the Cyprus Plan for Rare Diseases
vscoutel@cablenet.com.cy
Czech Republic
Denmark
Estonia
Finland
France
Germany
Referat 313 ("Molekulare Medizin, Bioethik") - Division 313
Bundesministerium für Gesundheit
Federal Ministry of Health
313@bmg.bund.de
Referat 313 ("Molekulare Medizin, Bioethik") - Division 313
Bundesministerium für Gesundheit
Federal Ministry of Health
313@bmg.bund.de
Birgit SCHNIEDERS
EUCERD Representative and EUCERD Alternate Representative GermanyReferat 313 ("Molekulare Medizin, Bioethik") - Division 313
Bundesministerium für Gesundheit
Federal Ministry of Health
313@bmg.bund.de
Véronique HÉON-KLIN
EUCERD Representative and EUCERD Alternate Representative GermanyReferat 313 ("Molekulare Medizin, Bioethik") - Division 313
Bundesministerium für Gesundheit
Federal Ministry of Health
313@bmg.bund.de
Greece
Hungary
www.rirosz.hu
brunner@rirosz.hu
József Károlyné BRUNNER
Committee of Developing the Hungarian RD National Planwww.rirosz.hu
brunner@rirosz.hu
Ireland
Italy
Latvia
Lithuania
Vilnius
Birute.Kavaliauskiene@sam.lt
Vilnius
Vilnius
Birutė KAVALIAUSKIENĖ
Health Ministry of the Republic of Lithuania (SAM)Vilnius
Birute.Kavaliauskiene@sam.lt
Ilona BANYTĖ
Health Ministry of the Republic of Lithuania (SAM)Vilnius
Romalda BARANAUSKIENĖ
Health Ministry of the Republic of Lithuania (SAM)Vilnius
Luxembourg
Malta
Ministry for Health, the Elderly and Community Care - MHEC
Valletta
Phone +356 99824521
www.ehealth.gov.mt
miriam.dalmas@gov.mt
Department of Health,
Ministry for Health, the Elderly and Community Care - DHIR
Guardamangia
Phone +356 25599262
www.ehealth.gov.mt
miriam.gatt@gov.mt
Superintence for Pubblic Health
Ministry for Health, the Elderly and Community Care - DHPDP
Msida
Phone +356 23266000
www.ehealth.gov.mt
mariella.borg-buontempo@gov.mt
Mater Dei Hospital - MDH
Msida
Phone +356 25454940
www.ehealth.gov.mt
doriette.m.soler@gov.mt
Mater Dei Hospital - MDH
Msida
Phone +356 99473568
www.ehealth.gov.mt
christian.scerri@gov.mt
Maria (Miriam) DALMAS
Department of HealthMinistry for Health, the Elderly and Community Care - MHEC
Valletta
Phone +356 99824521
www.ehealth.gov.mt
miriam.dalmas@gov.mt
Miriam GATT
Directorate Health Information and ResearchDepartment of Health,
Ministry for Health, the Elderly and Community Care - DHIR
Guardamangia
Phone +356 25599262
www.ehealth.gov.mt
miriam.gatt@gov.mt
Mariella BORG BUONTEMPO
Directorate for Health Promotion and Disease PreventionSuperintence for Pubblic Health
Ministry for Health, the Elderly and Community Care - DHPDP
Msida
Phone +356 23266000
www.ehealth.gov.mt
mariella.borg-buontempo@gov.mt
Doriette SOLER
Department of PaediatricsMater Dei Hospital - MDH
Msida
Phone +356 25454940
www.ehealth.gov.mt
doriette.m.soler@gov.mt
Christian SCERRI
Department of PathologyMater Dei Hospital - MDH
Msida
Phone +356 99473568
www.ehealth.gov.mt
christian.scerri@gov.mt
Netherlands
Poland
Portugal
Romania
Ministerul Sanatatii - MS
Bucharest
Phone +40722303717
www.ms.gov.ro
severin@cis.ro
severin.emilia@umf.ro
Ministerul Sanatatii - MS
Bucharest
Phone (+4) 021.318.05.22
www.ms.gov.ro
anamariavladareanu@yahoo.com
Alianta Nationala Pentru Boli Rare – ANBR-RO
Zalau
Phone +40 726 248 707
www.apwromania.ro
doricad@yahoo.co
Universitatea de Medicina si Farmacie “Gr.T.POPA”- UMF
Iasi
Phone +40 726 307328
www.umfiasi.ro
vgord@mail.com
Universitatea de Medicina si Farmacie “Gr.T.POPA”- UMF
Iasi
Phone +40 745 432 077
www.umfiasi.ro
abcrusu@gmail.com
Universitatea de Medicina si Farmacie ”Victor Babes” (UMFT)
Timisoara
Phone +40 745 138 917
www.umfiasi.ro
maria.puiu@gmail.com
Universitatea de Medicina si Farmacie Targu Mures (UMFTGM)
Targu-Mures
Phone +40 742 121 885
www.umftgm.ro
moldovan.dumitru@gmail.com
Ministerul Sanatatii - MS
Bucharest
Ministerul Sanatatii - MS
Bucharest
Emilia SEVERIN
Ministry of HealthMinisterul Sanatatii - MS
Bucharest
Phone +40722303717
www.ms.gov.ro
severin@cis.ro
severin.emilia@umf.ro
Ana-Maria VLADAREANU
Ministry of HealthMinisterul Sanatatii - MS
Bucharest
Phone (+4) 021.318.05.22
www.ms.gov.ro
anamariavladareanu@yahoo.com
Dorica DAN
Romanian National Alliance for Rare DiseasesAlianta Nationala Pentru Boli Rare – ANBR-RO
Zalau
Phone +40 726 248 707
www.apwromania.ro
doricad@yahoo.co
Vlad GORDUZA
“Gr.T.Popa” University of Medicine and PharmacyUniversitatea de Medicina si Farmacie “Gr.T.POPA”- UMF
Iasi
Phone +40 726 307328
www.umfiasi.ro
vgord@mail.com
Cristina RUSU
“Gr.T.Popa” University of Medicine and PharmacyUniversitatea de Medicina si Farmacie “Gr.T.POPA”- UMF
Iasi
Phone +40 745 432 077
www.umfiasi.ro
abcrusu@gmail.com
Maria PUIU
“Victor Babes” University of Medicine and PharmacyUniversitatea de Medicina si Farmacie ”Victor Babes” (UMFT)
Timisoara
Phone +40 745 138 917
www.umfiasi.ro
maria.puiu@gmail.com
Dumitru MOLDOVAN
University of Medicine and Pharmacy Targu MuresUniversitatea de Medicina si Farmacie Targu Mures (UMFTGM)
Targu-Mures
Phone +40 742 121 885
www.umftgm.ro
moldovan.dumitru@gmail.com
Mihaela BARDOS
Ministry of HealthMinisterul Sanatatii - MS
Bucharest
Calin ALEXANDRU
Ministry of HealthMinisterul Sanatatii - MS
Bucharest
Slovakia
Fakultná nemocnica s poliklinikou v Žiline)
Žilina
Phone +00421 41 5110 245, 698
www.rarediseases.ru
cisgen@fnspza.sk
František CISARIK, CSCŠ
Departement of Clinical Genetics, Faculty Hospital ŽilinaFakultná nemocnica s poliklinikou v Žiline)
Žilina
Phone +00421 41 5110 245, 698
www.rarediseases.ru
cisgen@fnspza.sk
Slovenia
Klinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
borut.peterlin@guest.arnes.si
Klinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
Phone +38615401137
ales.maver@gmail.com
Ljubljana
Klinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
Ljubljana
Ljubljana
Borut PETERLIN
Institute of Medical Genetics, Department of Obstetrics and Gynaecology,UMCKlinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
borut.peterlin@guest.arnes.si
Aleš MAVER
Institute of Medical Genetics, Department of Obstetrics and Gynaecology,UMCKlinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
Phone +38615401137
ales.maver@gmail.com
Doroteja NOVAK GOSARIČ
Ministry of HealthLjubljana
Luca LOVREČIČ
Institute of Medical Genetics, Department of Obstetrics and Gynaecology,UMCKlinični inštitut za medicinsko genetiko, Univerzitetni klinični center
Ljubljana
Eva MURKO
Ministry of HealthLjubljana
Mircha POLDRUGOVAC
Institut of public healthLjubljana
Spain
Ministerio de Sanidad, Servicios Sociales e Igualdad (MSSSI)
Madrid
Phone +34 915961557
www.msssi.gob.es
psolerc@msssi.es
Ministerio de Sanidad, Servicios Sociales e Igualdad (MSSSI)
Madrid
Phone +34915961358
www.msssi.gob.es
ipenarey@msssi.es
Pilar SOLER CRESPO
Ministry of Health, Social Services and EqualityMinisterio de Sanidad, Servicios Sociales e Igualdad (MSSSI)
Madrid
Phone +34 915961557
www.msssi.gob.es
psolerc@msssi.es
Isabel PEÑA-REY LORENZO
Ministry of Health, Social Services and EqualityMinisterio de Sanidad, Servicios Sociales e Igualdad (MSSSI)
Madrid
Phone +34915961358
www.msssi.gob.es
ipenarey@msssi.es
Sweden
www.socialstyrelsen.se
susanne.bergman@socialstyrelsen.se
Susanne BERGMAN
National Board of Health and Welfarewww.socialstyrelsen.se
susanne.bergman@socialstyrelsen.se
United Kingdom
specialisedservices.nhs.uk
edmund.jessop@ncg.nhs.uk
Edmund JESSOP
National Specialised Commissioning Teamspecialisedservices.nhs.uk
edmund.jessop@ncg.nhs.uk