Partners

E-HOD adds value to the existing E-IMD project by using the same registry technology and network.

E-HOD consists of thirteen contracting partners who have received funding from the European Commission's Executive Agency for Health and Consumers (EAHC). The project is led by the VUMC, under the coordination of Prof Henk Blom. A further twelve associated partners have defined responsibilities for developing and implementing the project.

In addition to the funded partners, there are unfunded collaborating partners. They benefit from access to the registry, workshops, meetings and information resources being developed by E-HOD, and their activities extend the reach of the project beyond the funded partners.

We would be delighted to welcome additional care providers, clinicians, and patient groups to the project as collaborating partners – please contact the coordinator for more information.

Partners list

Legend:
Clinical partners (including laboratory): associate and collaborating partners
Patient support groups, industry and other

Clinical partners (including laboratory): associate and collaborating partners

Country

Organisation legal name
City / Contact person / Email / Telephone

Spain

Hospital Infantil Miguel Servet
City: Zaragoza
Contact: Marta López
E-mail: marta.lopez.ubeda@gmail.com

Germany

Universitätsklinikum Freiburg
City: Freiburg
Contact: Henk Blom
E-mail: henk.blom@uniklinik-freiburg.de
Tel.: +49 761 270-43680

Austria

Landeskrankenhaus Bregenz
City: Bregenz
Contact: Martina Huemer
E-mail: Martina.Huemer@lkhb.at
Tel.: +43 55 744 010

Center Medical Genetics Innsbruck/division Human Genetics at Medical University Innsbruck
City: Innsbruck
Contact: Johannes Zschocke
E-mail: johannes.zschocke@i-med.ac.at
Tel.: +43 5 12 9003

Belgium

Universite de Liège, Metabolic Center
City: Liège
Contact: Francois-Guillaume Debray
E-mail: fg.debray@chu.ulg.ac.be
Tel.: +32 4 366 8403

University Children’s Hospital Queen Fabiola
City: Brussels
Contact: Dr. Corinne De Laet, MD
E-mail: corinne.de.Laet@huderf.be
Tel.: 32 2 477 25 71

Centre Agréé des Maladies Héréditaires du Métabolisme
City: 6041 Charleroi (Gosselies)
Contact: Dominique ROLAND, MD
E-mail: dominique.roland@ipg.be
Tel.: +32 (0)71 447 116

Brazil

Medical Genetics Service - Hospital de Clínicas de Porto Alegre, Bazil
City: Porto Alegre-RS
Contact: Ida Vanessa Doederlein Schwartz
E-mail: ide.ez@tene.com.br
Tel.: (51) 33598011

Instituto de Puericultura e Pediatria Martagão Gesteira
City: Rio de Janeiro
Contact: Márcia Ribeiro
E-mail: marciargen@yahoo.com.br

Croatia

Sveučlište u Zagrebu, Medicinski fakultet
City: Zagreb
Contact: Ivo Baric
E-mail: ibaric@kbc-zagreb.hr
Tel.: +385 1 2368 318

Czech Republic

Univerzita Karlova, 1.lékařská fakulta
City: Prague
Contact: Viktor Kožich
E-mail: Viktor.Kozich@lf1.cuni.cz
Tel.: +420 224 967 679

Denmark

Klinisk Genetisk Afdeling Rigshospitalet
City: Copenhagen
Contact: Allan Meldgaard Lund
E-mail: allan.meldgaard.lund@rh.regionh.dk

France

Hôpital Robert Debré (AP-HP)
City: Paris
Contact: Hélène Ogier de Baulny
E-mail: helene.ogier@rdb.aphp.fr
Tel.: +33 1 4003 2326

Hôpital Jeanne de Flandre CHRU
City: Lille
Contact: Dries Dobbelaere
E-mail: dobbelaeredries@skynet.be
Tel.: +33 3 2044 4149

Hôpital Necker Enfants Malade
City: Paris
Contact: Vassili Valayannopoulos
E-mail: vassili.valaya@nck.ap-hop-paris.fr
Tel.: +33 1 4449 4858

Assistance Publique Hospitaux de Marseille (APHM)
City: Marseille
Contact: Prof. Brigitte Chabrol
E-mail: brigitte.chabrol@ap-hm.fr
Tel.: +33 4 91 38 00 00

CHRU Angers
City: Angers
Contact: Christian Lavigne
E-mail: chlavigne@chu-angers.fr

Centre des maladies héréditaires et métaboliques, Hôpital Pellegrin
City: Bordeaux
Contact: Isabelle Redonnet
E-mail: isabelle.redonnet-vernhet@chu-bordeaux.fr

CHRU Tours
City: Tours
Contact: Francois Maillot
E-mail: francois.maillot@univ-tours.fr

CHU Brabois Enfant
City: Nancy
Contact: François Feuillet
E-mail: f.feillet@chu-nancy.fr

Hôpital Femme Mère-Enfant
City: Lyon
Contact: Nathalie Guffon
E-mail: nathalie.guffon@chu-lyon.fr

Hôpital Pitié-Salpêtrière
City: Paris
Contact: Yann Nadjar
E-mail: yann.nadjar@psl.aphp.fr
Tel.: +33 (0) 142161752

Greece

Thessaloniki University A, Pediatric Department-Metabolic Laboratory
City: Thessaloniki
Contact: Persephone Augoustides Savvopoulou
E-mail: persefon@med.auth.gr

Germany

Universitätsklinikum Heidelberg
City: Heidelberg
Contact: Stefan Kölker
E-mail: Stefan.Koelker@med.uni-heidelberg.de
Tel.: +49 6221 56 4002

Kreiskliniken Reutlingen GmbH
City: Reutlingen
Contact: Peter Freisinger
E-mail: freisinger_p@klin-rt.de

Klinikum Dritter Orden München
City: München-Nymphenburg
Contact: Martina Baethmann
E-mail: m.baethmann@dritter-orden.de

Hungary

University of Szeged, Faculty of Medicine, Dept. Of Pediatrics, Newborn Metabolic Screening Laboratory
City: Szeged
Contact: Dr. Gábor Z. Rácz, PhD
E-mail: racz.gabor.zoltan@med.u-szeged.hu

Ireland

Children’s University Hospital
City: Dublin
Contact: Ellen Crushell
E-mail: Ellen.Crushell@cuh.ie

Italy

Ospedale Pediatrico Bambino Gesù
City: Rome
Contact: Carlo Dionisi-Vici
E-mail: carlo.dionisivici@opbg.net
Tel.: +39 66 859 2275

Azienda Ospedaliera di Padova
City: Padova
Contact: Alberto Burlina
E-mail: burlina@pediatria.unipd.it

Istituto Giannina Gaslini, Genova
City: Genova
Contact: Roberto Cerone
E-mail: RobertoCerone@ospedale-gaslini.ge.it
Tel.: +39 010 56362369

Meyer Children Hospital, dept Neuroscience, Metabolic Unit and NBS
City: Firenze
Contact: Dr. Elisabetta Pasquini
E-mail: e.pasquini@meyer.it
Tel.: 390 555 662 409

Lithuania

Kaunas University of Medicine
City: Kaunas
Contact: Birute Burnyte
E-mail: birute.burnyte@gmail.com

Netherlands

UMC St Radboud
City: Nijmegen
Contact: Mirian Janssen
E-mail: M.Janssen@aig.umcn.nl
Tel.: +31 24 361 8819

Academisch Medisch Centrum
City: Amsterdam
Contact: Frits Wijburg
E-mail: f.a.wijburg@amc.uva.nl
Tel.: +31 20 566 8890

Poland

National Consultant in paediatric metabolic medicine Screening Department, The Institute of Mother and Child
City: Warsaw
Contact: Jolanta Sykut-Cegielska
E-mail: jolanta.cegielska@imid.med.pl
Tel.: +48 22 32 77 375

Portugal

Faculdade de Farmacia da Universidade de Lisboa
City: Lisboa
Contact: Isabel Tavares de Almeida
E-mail: italmeida@ff.ul.pt
Tel.: +3 517 946 400

Hospital de Sao Joao, EPE
City: Porto
Contact: Elisa Leao Teles
E-mail: e.leaoteles@gmail.com; e.leaoteles@hsjoao.min-sause.pt
Tel.: +351 02 981 0097

Hospital Pediátrico de Coimbra
City: Centro Hospitalar e Universitário de Coimbra Quinta dos Vales 3041-801 Coimbra
Contact: Luisa Diogo
E-mail: diogo.luisa@gmail.com

Qatar

Hamad Medical Corporation
City: Doha
Contact: Tawfeg Ben-Omran
E-mail: tawben11@hotmail.com
Tel.: +974 44 395 191

Romania

Institute for Mother and Child Care "Alfred Rusescu"
City: Bucharest
Contact: Paula Avram
E-mail: avram.paula@gmail.com
Tel.: +40 72 273 6136

Spain

Centro de Investigacion Biomedica en Red de Enfermedades Raras (CIBERER)
City: Santiago de Compostela
Contact: Maria Luz Couce
E-mail: maria.luz.couce.pico@sergas.es

Hospital Materno-Infantil (HRU Carlos Haya)
City: Málaga
Contact: Javier Blasco-Alonso
E-mail: javierblascoalonso@yahoo.es

Hospital Universitario Son Espases
City: Palma de Mallorca
Contact: Angeles Ruiz Gómez
E-mail: angelesruizgomez@gmail.com

Hospital General Universitario de Albacete
City: Albacete
Contact: Elena Balmaseda Serrano
E-mail: bselena@sescam.jccm.es

Hospital Universitario Cruces
City: Barakaldo
Contact: Luis Aldámiz-Echevarría
E-mail: LUISJOSE.ALDAMIZ-ECHEVARAZUARA@osakidetza.net

Hospital Universitario Valle de Hebrón
City: Barcelona
Contact: Rosa Burgos Peláez
E-mail: rburgos@vhebron.net

Hospital Sant Joan de Déu
City: Barcelona
Contact: Sofía Isabel Barbosa Sousa Gouveia
E-mail: sofia.bsg@gmail.com

Hospital Universitario Virgen de la Arrixaca
City: El Palmar
Contact: Sofía Isabel Barbosa Sousa Gouveia
E-mail: sofia.bsg@gmail.com

Complejo Hospitalario Universitario Insular Materno-Infantil de Gran Canaria
City: Las Palmas de Gran Canaria
Contact: Luís Peña Quintana
E-mail: lpena@dcc.ulpgc.es

Hospital Infantil Universitario Niño Jesús
City: Madrid
Contact: Sofía Isabel Barbosa Sousa Gouveia
E-mail: sofia.bsg@gmail.com

Hospital Universitario 12 de Octubre
City: Madrid
Contact: María Teresa García Silva
E-mail: mgarciasilva@salud.madrid.org
Tel.: +34 91 390 88 87

Hospital Universitario La Paz
City: Madrid
Contact: Ana Moráis López
E-mail: ana_morais_lopez@hotmail.com

Hospital Universitario Ramón y Cajal
City: Madrid
Contact: Sofía Isabel Barbosa Sousa Gouveia
E-mail: sofia.bsg@gmail.com

Nuestra Señora de la Candelaria
City: Santa Cruz de Tenerife
Contact: Mónica Ruiz Pons
E-mail: monicarpons@yahoo.es

Hospital Universitario Marqués de Valdecilla
City: Santander
Contact: Sofía Isabel Barbosa Sousa Gouveia
E-mail: sofia.bsg@gmail.com

Hospital Universitario Virgen del Rocío
City: Sevilla
Contact: María Bueno
E-mail: mbuenod@yahoo.es

Hospital Universitario La Fe
City: Valencia
Contact: Jaime Dalmau Serra
E-mail: dalmau_jai@gva.es

Hospital Universitario Río Hortega
City: Valladolid
Contact: Carlos Alcalde Martin
E-mail: calcalma@saludcastillayleon.es

Sweden

Karolinska Institutet
City: Stockholm
Contact: Anna Wedell
E-mail: Anna.Wedell@ki.se
Tel.: +46 85 177 6535

Switzerland

Kinderspital Zürich, Universitäts-Kinderkliniken, Eleonoren-Stiftung
City: Zürich
Contact: Matthias Baumgartner
E-mail: matthias.baumgartner@kispi.uzh.ch
Tel.: +41 44 266 7722

Turkey

Istanbul University, Children’s Hospital, Department of Nutrition and Metabolism
City: Istanbul
Contact: Mubeccel Demirkol
E-mail: demirkolm@istanbul.edu.tr
Tel.: +90 212 414 2000-31439

United Kingdom

The University of Manchester
City: Manchester
Contact: Andrew Morris
E-mail: Andrew.Morris@cmft.nhs.uk
Tel.: 441 619 462 400

Great Ormond Street Hospital
City: London
Contact: Stephanie Grünewald
E-mail: Stephanie.Grunewald@gosh.nhs.uk
Tel.: +44 20 7405 9200

Royal Hospital for Sick Children
City: Glasgow
Contact: Bernd Schwahn
E-mail: Bernd.Schwahn@nhs.net
Tel.: +441 412 010 000

Royal Hospital for Sick Children
City: Belfast
Contact: Siobhan O'Sullivan
E-mail: shivosull@hotmail.com
Tel.: +44 121 333 9907/8

Birmingham Children’s Hospital NHS Foundation Trust
City: Birmingham
Contact: Anupam Chakrapani
E-mail: ANUPAM.CHAKRAPANI@bch.nhs.uk

Sheffield Children’s Hospital
City: Sheffield
Contact: Prof. Dr. Sufin Yap
E-mail: profsyap@gmail.com
Tel.: +44 1142717000

Central Manchester University Hospitals NHS Foundation Trust
City: Manchester
Contact: Andrew Morris
E-mail: Andrew.Morris@cmft.nhs.uk
Tel.: +44 161 701 2670

National Hospital for Neurology and Neurosurgery, Charles Dent Metabolic Unit
City: London, Queen Square
Contact: Robin Lachmann
E-mail: r.lachmann@ucl.ac.uk

The Leeds Teaching Hospitals, NHS Trust
City: West Yorkshire
Contact: Mick Henderson
E-mail: Mick.Henderson@leedsth.nhs.uk
Tel.: +44 1132432799

Bradford Royal Infirmary
City: Bradford
Contact: John Walter
E-mail: john.walter@cmft.nhs.uk

Alder Hey Children’s Hospital NHS Foundation Trust
City: Liverpool
Contact: Andrew Morris
E-mail: Andrew.Morris@cmft.nhs.uk

Evelina Children’s Hospital
City: London
Contact: Helen Mundy
E-mail: Helen.Mundy@gstt.nhs.uk

Salford Royal NHS Foundation Trust
City: Salford
Contact: Chris Hendriksz
E-mail: Chris.Hendriksz@srft.nhs.uk

USA

George Washington University, Children’s National Medical Center, Genetics and Metabolism
City: Washington, Columbia
Contact: Kimberly A. Chapman, M.D., Ph.D.
E-mail: kchapman@childrensnational.org

University of Colorado School of Medicine
City: Aurora
Contact: Jan Kraus
E-mail: jan.kraus@ucdenver.edu


Patient support groups, industry and other

Country

Organisation legal name
City / Contact person / Email / Telephone

Brazil

Associação Brasileira de Homocistinuria
City: Rio de Janeiro
Contact: Simone Allan Arede
E-mail: simonearede@gmail.com

France

Orphan Europe
City: Paris La Defense
Contact: Samantha Parker
E-mail: sparker@orphan-europe.com

Italy

National Centre for Rare Disease Instituto Superiore di Sanita EPIRARE
City: Rome
Contact: Domenica Taruscio
E-mail: domenica.taruscio@iss.it

Netherlands

Volwassenen en Kinderen met Stofwisselingsziekten (VKS)
City: Zwolle
Contact: Hanka Meutgeert
E-mail: h.meutgeert@stofwisselingsziekten.nl
Tel.: +31 38 420 1764

Australia

HCU Network Australia
Contact: Tara Morrison
E-mail: info@hcunetworkaustralia.org.au

United Kingdom

University of Newcastle TREAT-NMD
City: Newcastle
Contact: Kate Bushby
E-mail: kate.bushby@newcastle.ac.uk

Climb, National Information Centre for Metabolic Diseases
City: Crewe
Contact: Steve Hannigan
E-mail: steve@climb.org.uk
Tel.: +448 452 412 173