meeting of the task force on rare diseases -...

Commission européenne, L-2920 Luxembourg. Telephone: (352) 43 01-1. 08/07/2004

EUROPEAN COMMISSION HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL Directorate C - Public Health and Risk Assessment C2 - Health information

TASK FORCE ON RARE DISEASES (TFRD)

List of Members (Draft)

Member States Experts p. 2

Acceding and Candidate Countries Experts p. 5

International organisations p. 7

Estat – Core Groups Leaders p. 8

Estat - Task Force Morbidity p. 8

Project leaders of the HMP (1997-2002) p. 9

Project leaders Rare Diseases (1999-2003) p. 11

Morbidity and Mortality Working Party, Leader and Deputy p. 19

European Commission p. 20

Task Force on Rare Diseases

Member States Experts

FRANCE

Ségolène AYMÉ Member and leader TFRD INSERM SC 11 102, rue Didot FR - 75014 PARIS Tel : + 33 (0)1 56 53 81 39 Fax : + 33 (0)1 56 53 81 38 courriel : [email protected] (+ project leader Rare Diseases : Orphanet)

ITALY

Domenica TARUSCIO Member TFRD Centro Nazionale Malattie Rare Istituto Superiore di Sanita Viale Regina Elena, 299 IT - 00161 ROME Tel. : +39 (06) 49.90.28.05 Fax : +39 (06) 49.38.71.40 E-mail : [email protected] (+ project leader Rare Diseases: NEPHIRD 1 + 2)

LUXEMBOURG

Yolande WAGENER Member TFRD Direction de la Santé Villa Louvigny Allée Marconi LU – 2120 LUXEMBOURG E-mail: [email protected]

NETHERLANDS

Marijke W. DE KLEIJN - DE VRANKRIJKER Observer TFRD Head WHO Collaborating Centre for the Family of International Classifications (WHO-FIC) c/o RIVM PO Box 1 NL - 3720 BA BILTHOVEN Tel.: +31 30 274 4276 Fax: +31 30274 4450 E-mail: [email protected]

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mailto:[email protected]





PORTUGAL

Judite CATARINO Observer TFRD Direcção Geral da Saúde Alameda D. Afonso Henriques, 45 PT – 1049-005 LISBOA Tel.: +351 21 84 30 526 Fax: +351 21 84 30 687 E-mail: [email protected]

SPAIN

Rosa MATAIX GONZÁLEZ Nominated: Manuel POSADA De La PAZ Head of Unit Ministerio de Sanidad y Consumo Paseo del Prado, 18-20 ES - 28071 MADRID Tel: +34 91 596 17 76 Fax: +34 91 596 41 11 E-mail: [email protected]

Manuel POSADA De La PAZ Member TFRD Instituto de Salud Carlos 3 Centro de Investigación sobre el Síndrome del Aceite Toxico Silesio Delgado 6, ES – 28029 MADRID Tel.: +34 91 3877898 E-mail: [email protected]

SWEDEN

Magnus STENBECK Observer TFRD Chef för Analysenheten Nominated: Anders FASTH Epidemiologiskt Centrum Socialstyrelsen SE - 10333 STOCKHOLM Tel.: (+46) 8555 531 17 E-mail: [email protected]

Anders FASTH, MD, PhD Member TFRD Profesor of Pediatric Immunology Division of Immunology The Queen Silvia Children’s Hospital SE – 416 85 GÖTEBORG Tel.: +46 31 343 5220 (switchboard 343 4000) Fax: +46 31 84 30 10 E-mail: [email protected]

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UNITED KINGDOM

Peter GOLDBLATT Nominated: Edmund JESSOP Office for National Statistics 1 Drummond Gate UK - SWIV 2QQ LONDON Tel.: +44 (0) 201 533 5265 Fax: +44 (0) 201 533 5103 E-mail: [email protected] (+ ONS within Task Force Morbidity Eurostat)

Edmund JESSOP Member TFRD Dept. of Health Office for National Statistics 1 Drummond Gate UK – SWIV 2QQ LONDON Tel.: +44 (0) 204 533 5265 Fax: +44 (0) 204 533 5103 E-mail: [email protected]

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Acceding and Candidate Countries Experts

CYPRUS

Pavlos PAVLOU Observer TFRD IT co-ordinator Will nominate a member Ministry of Health 10 Marcou Drakou CY - 1448 NICOSIA Tel.: (+357) 22 400 220 Fax: (+357) 22 305 346 E-mail: [email protected]

ESTONIA

Luule SAKKEUS Observer TFRD Head of the Health Statistics Unit Department of Health Information and Analysis Ministry of Social Affairs Gonsiori 29 EE – 15027 TALLINN Tel.: (+372) 62 69 161 Fax: (+372) 6269 124 E-mail: [email protected]

HUNGARY

János SÁNDOR Member TFRD University of Science Public Health Institute Szigeti 12, HU – 7643 PÉCS Tel.: +36 20 932 31 40 Fax: +36 72 536 397 E-mail: [email protected]

LATVIA

Dace MIHALOVSKA Observer TFRD Chief of Public Health Unit Health Statistics Department Health Statistics and Medical Technology Agency Duntes 12/22 LV-1005 RIGA Tel.: +371 75 01 590 Fax: +371 75 01 591 E-mail: [email protected]

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MALTA

Renzo PACE ASCIAK Member TFRD Consultant Health Information 95 G’Mangia Hill MT - MSD 08 G’MANGIA Tel.: Fax : E-mail: [email protected]

POLAND

Bogdan WOJTYNIAK Observer TFRD National Institute of Hygiene - Department of Medical Statistics Chocimska 24 PL - 00-791 WARSAW Tel.: +48 22 54 21 229, Fax: +48 22 849 74 84 E-mail: [email protected]

SLOVENIA

Jožica ŠELB ŠEMERL Observer TFRD Head of Mortality Statistics Institute of Public Health of Republic Slovenia Trubarjeva cesta 2 SI - 1000 LJUBLJANA Tel.: +386 01 2441 460 Fax: +386 01 E-mail: [email protected]

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International Organisations

WHO

Anca DUMITRESCU Director Division of Information, Evidence and Communication World Health Organisation Regional Office for Europe 8 Scherfigsvej DK – 2100 COPENHAGEN Tel.: (+45) 3917 1518 Fax: (+45) 3917 1868 E-mail: [email protected]

OECD

Manfred HÜBER OECD Health Policy Unit 2, rue Ané Pascal FR - 75775 PARIS Cedex 16 Tel.: (+33) 1 45 24 76 33 Fax: (+33) 1 44 30 63 61 E-mail: [email protected]

IARC

Peter BOYLE Director International Agency for Reseach on Cancer (IARC) 150, Cours Albert Thomas FR - 69008 LYON Tel. : +33 (.4) Fax : +33 (.4) E-mail: [email protected]

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ESTAT Core Group leaders (Causes of Death and HIS + Morbidity)

Causes of Death Core Group (incl. ESTAT Task Force on Causes of Death Statistics)

Mag. Barbara LEITNER Observer TFRD Statistik Austria Bundesanstalt Statistik Österreich Direktion Bevölkerung Bereich Demographie und Arbeitsmarkt Hintere Zollamtstrasse 2b AT - 1035 WIEN Tel.: ++43 1 711 28 7262 Fax: ++43 1 718 5060 E-mail: [email protected]

Eurostat - Morbidity Task Force

Jacques BONTE Observer TFRD Baron Joseph Ryelandtstraat, 4 BE - 8000 Bruges Tel.: +32 (0) 50 32 33 61 Fax: +32 (0) 50 32 33 61 E-mail: [email protected]

INET-FI

Erzsebet STOKKER Observer TFRD Hungarian Central Statistical Office Population, Health and Welfare Statistics Dept. Keleti Károly u. 5-7 HU - 1024 BUDAPEST Tel.: +36 1 345 65 72 Fax: +36 1 345 66 78 E-mail: [email protected]

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Health Monitoring Programme (1997-2002) Morbidity and Mortality project leaders

FRANCE

IINNDDIICCAATTOORRSS FFOORR MMOONNIITTOORRIINNGG AANNDD EEVVAALLUUAATTIINNGG PPEERRIINNAATTAALL HHEEAALLTTHH IINN EEUURROOPPEE ((PPEERRIISSTTAATT)) (Completed project)

Jennifer ZEITLIN Member TFRD Epidiemology Research Unit on Perinatal and Women's Health INSERM U 149 123, Bd de Port Royal FR - 75014 PARIS Tel. : +33 (1) Fax : +33 (1) E-mail: [email protected] (+ Mortality and Morbidity Working Party Leader)

ITALY ITALY

HHEEAALLTTHH IINNDDIICCAATTOORRSS FFOORR MMOONNIITTOORRIINNGG CCAANNCCEERR IINN EEUURROOPPEE ((EEUURROOCCHHIIPP 11)) ((PPHHAASSEE 11)) (Completed project)

Andrea MICHELI Member TFRD Istituto Nazionale Tumori Unit of Epidemiology Via Venezian, 1 IT - 20133 MILANO Tel. : +39 (.02) .23.90.2867 Fax : +39 (.02) .2668.1292 E-mail : [email protected]

Paolo BAILI Member TFRD International Institute of Cancer Unit of Descriptive Epidemiology Via Venezian, 1 I - 20133 MILANO Tel.: +39 02 23 90 35 27 Fax: +39 02 26 68 12 92 E-mail: [email protected]

CCAARRDDIIOOVVAASSCCUULLAARR IINNDDIICCAATTOORRSS SSUURRVVEEIILLLLAANNCCEE SSEETT IINN EEUURROOPPEE ((EEUURROOCCIISSSS 11)) ((PPHHAASSEE 11)) (Completed project)

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Task Force on Rare Diseases Simona GIAMPAOLI Member TFRD Laboratorio di Epidemiologia e Biostatistica Istituto Superiore di Sanità Viale Regina Elena, 299 IT - 00198 ROMA Tel. : +39 (.06) .49.90.25.56 Fax : +39 (.06) .49.38.70.69 E-mail : [email protected]

LUXEMBOURG LUXEMBOURG

EESSTTAABBLLIISSHHMMEENNTT OOFF IINNDDIICCAATTOORRSS MMOONNIITTOORRIINNGG DDIIAABBEETTEESS MMEELLLLIITTUUSS AANNDD IITTSS MMOORRBBIIDDIITTYY ((EEUUDDIIPP)) (Completed project)

Carine DE BEAUFORT Member TFRD Centre Hospitalier de Luxembourg - Clinique Pédiatrique 4, rue Barblé LU - 1210 LUXEMBOURG Tel. : +352 (.44) .11.31.33 Fax : +352 (.44) .11.61.16 E-mail : [email protected]

UNITED KINGDOM UNITED KINGDOM

BBAASSEEDD OONN LLIIVVEE DDAATTAA CCHHIILLDD HHEEAALLTTHH IINNDDIICCAATTOORRSS OOFF LLIIFFEE AANNDD DDEEVVEELLOOPPMMEENNTT ((BBOOLLDD CCHHIILLDD)) (Completed project)

Michael RIGBY Member TFRD Keele University Centre for Health Planning and Management Darwin Building Keele UK - ST5 5 BG STRAFFORDSHIRE Tel. : +44 1782.58.31.93 Fax : +44 1782.71.17.37 E-mail : [email protected]

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LIST OF PROJECT LEADERS OF THE RARE DISEASES PROGRAMME (1999-2003)

AUSTRIA AUSTRIA

RRAARREE PPUULLMMOONNAARRYY DDIISSEEAASSEESS –– SSEETT UUPP OOFF DDIIAAGGNNOOSSTTIICC CCRRIITTEERRIIAA AANNDD RREEFFEERREENNCCEE//TTRRAAIINNIINNGG CCEENNTTRREE (Completed project)

Helmut H. POPPER Member TFRD University of Graz Auenbruggerplatz 25 AT - 8036 GRAZ Tel.: Fax: E-mail : [email protected]

BELGIUM BELGIUM

EESSTTAABBLLIISSHHIINNGG EEUURROOPPEEAANN NNEEUURROOFFIIBBRROOMMAATTOOSSIISS LLAAYY GGRROOUUPP NNEETTWWOORRKK.. HHEEAALLTTHH PPRROOMMOOTTIIOONN IIMMPPRROOVVIINNGG HHEEAALLTTHH IINNFFOORRMMAATTIIOONN AANNDD KKNNOOWWLLEEDDGGEE FFOORR NNEEUURROOFFIIBBRROOMMAATTOOSSIISS ((NNFF)) IINN EEUURROOPPEE..

Lúcia do Socorro COSTA DE LEMOS Member TFRD President APNF Project leader European Federation for Neurofibromatosis Association (NF Europe) Rua Marquesa d’Alorna, n° 2-atelier PT - 2675 RAMADA E-mail: [email protected]

Mia De SCHEIRDER – DESMET Member TFRD President NF Europe Office manager for the EC project European Federation for Neurofibromatosis Association (NF Europe) Nijverheidsstrat 29/16 BE - 9100 SINT/NIKLAAS Tel: +32.3.76.61.341 Fax: +32.3.76.64.516 E-mail: [email protected]

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EEDDDDNNAALL –– EEUURROOPPEEAANN DDIIRREECCTTOORRYY OOFF DDNNAA LLAABBOORRAATTOORRIIEESS (Completed project)

Lionel Van Maldergem MD Member TFRD Centre de Génétique Humaine IPG (Institut de pathologie et de génétique) Allée des Templiers, 41 BE - 6280 LOVERVAL-GERPINNES Tel. : +32 (71) 47.3.047 Fax : +32 (71) 47.15.20 E-mail : [email protected]

FINLAND FINLAND

IINNFFOORRMMAATTIIOONN NNEETTWWOORRKK FFOORR IIMMMMUUNNOODDEEFFIICCIIEENNCCIIEESS (Completed project)

Mauno VIHINEN Member TFRD Institute of Medical Technology University of Tampere FI - 33014 TAMPERE Tel. : +358 (3) 215.7739 Fax : +358 (3) 215.7710 E-mail : [email protected]

FRANCE FRANCE

OORRPPHHAANNEETT 11 –– AA EEUURROOPPEEAANN DDAATTAABBAASSEE OONN RRAARREE DDIISSEEAASSEESS AANNDD OORRPPHHAANN DDRRUUGGSS ((PPHHAASSEE 11)) (Completed project) OORRPPHHAANNEETT 22 ((PPHHAASSEE 22)) (Completed project) OORRPPHHAANNEETT 33 ((PPHHAASSEE 33))

Ségolène AYME Member and Leader TFRD Project Leader INSERM SC11 Hôpital Broussais 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.81.39 Fax :+33 (1) 56.53.81.38 E-mail : [email protected] (+ expert nominated by France)

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Task Force on Rare Diseases Valérie FONTENY Member TFRD Project manager INSERM SC11 Hôpital Broussais 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.81.37 Fax : +33 (1) 56.53.81.38 E-mail : [email protected]

OORRPPHHAANN MMEEDDIICCIINNAALL PPRROODDUUCCTTSS TTOO TTHHEE SSEERRVVIICCEE OOFF PPAATTIIEENNTTSS AAFFFFEECCTTEEDD BBYY RRAARREE DDIISSEEAASSEESS ((PPAARRDD 11)) (Completed project) NNEEWW CCOOMMMMUUNNIICCAATTIIOONN TTEECCHHNNOOLLOOGGIIEESS ((WWEEBB SSIITTEE)) TTOO TTHHEE SSEERRVVIICCEE OOFF TTHHEE RRAARREE DDIISSOORRDDEERRSS NNEETTWWOORRKK AANNDD SSHHAARRIINNGG OOFF GGOOOODD PPRRAACCTTIICCEESS IINN DDIIFFFFEERREENNTT HHEELLPP SSEERRVVIICCEESS TTOO PPAATTIIEENNTTSS,,AALLRREEAADDYY EEXXIISSTTIINNGG IINN EEUURROOPPEE ((PPAARRDD 22)) (Completed project) PPAANN--EEUURROOPPEEAANN NNEETTWWOORRKK FFOORR PPAATTIIEENNTTSS IINNFFOORRMMAATTIIOONN OONN RRAARREE AANNDD OORRPPHHAANN DDRRUUGGSS ((PPAARRTT 33))

Claire MARICHAL Member TFRD EURORDIS (European Organisation for Rare Disorder) Plate-forme maladies rares Hôpital Broussais, 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.52.10 Fax : +33 (1) 56.53.52.15 E-mail : [email protected]

Christel NOURISSIER Member TFRD EURORDIS (European Organisation for Rare Disorder) Plate-forme maladies rares Hôpital Broussais, 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.52.10 Fax : +33 (1) 56.53.52.15 E-mail: [email protected]

Yann LE CAM Nominated: François HOUYEZ Directeur Général EURORDIS (European Organisation for Rare Disorder) Plate-forme maladies rares Hôpital Broussais, 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.52.10 Fax : +33.1.56.53.52.15 E-mail : [email protected]

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Task Force on Rare Diseases François HOUYEZ Member TFRD EURORDIS (European Organisation for Rare Disorder) Plate-forme maladies rares Hôpital Broussais, 102, rue Didot FR - 75014 PARIS Tel. : +33 (1) 56.53.52.10 Fax : +33 (1) 56.53.52.15 E-mail: [email protected]

GERMANY GERMANY

EEUURROOMMUUSSCCLLEENNEETT –– MMUUSSCCLLEE DDIISSEEAASSEESS –– PPRROOTTOOTTYYPPEE OOFF RRAARREE AANNDD DDIISSAABBLLIINNGG DDIISSOORRDDEERRSS :: CCRREEAATTIIOONN OOFF AANN EEUURROOPPEEAANN IINNFFOORRMMAATTIIOONN NNEETTWWOORRKK

Simone SPULER Member TFRD Head of Neuromuscular Unit Dept. of Neurology – Charité University Hospital Campus Virchow Klinikum Augustenburger Platz 1 DE - 13344 BERLIN Tel. : +49 30.450 560 193 Fax : +49 30.450 560 982 E-mail : [email protected]

SSCCNN -- EEUURROOPPEEAANN NNEETTWWOORRKK OONN TTHHEE EEPPIIDDEEMMIIOOLLOOGGYY,, PPAATTHHOOPPHHYYSSIIOOLLOOGGYY AANNDD TTRREEAATTMMEENNTT OOFF SSEEVVEERREE CCHHRROONNIICC NNEEUUTTRROOPPEENNIIAA

Beate SCHWINZER Member TFRD Clinical manager European Severe Chronic International Registry Kinderklinik Medizinische Hochschule Hannover DE – 30623 HANNOVER Tel. : +49 511.55.71.05 Fax : +49 511.55.71.06 E-mail : [email protected]

Karl WELTE Nominated: Cornelia ZEIDLER Abteilung Kinderheilkunde IV Pädiatrische Hämatologie und Onkologie Medizinische Hochschule Hannover Carl-Neuberg-Strasse 1 DE - 30625 HANNOVER Tel. : +49 511.55.71.05 Fax : +49 511.55.71.06 E-mail: [email protected]

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Cornelia ZEIDLER Member TFRD Clinical manager Abteilung Kinderheilkunde IV Pädiatrische Hämatologie und Onkologie Medizinische Hochschule Hannover Carl-Neuberg-Straße 1 DE - 30625 HANNOVER Tel.: +49 511.71.05 Fax: +49 511.71.06 E-mail: [email protected]

ITALY ITALY

NNEEPPHHIIRRDD 11 –– AA EEUURROOPPEEAANN NNEETTWWOORRKK FFOORR EEPPIIDDEEMMIIOOLLOOGGIICCAALL AANNDD PPUUBBLLIICC HHEEAALLTTHH DDAATTAA CCOOLLLLEECCTTIIOONN OONN RRAARREE DDIISSEEAASSEESS ((PPHHAASSEE 11)) (Completed project) NNEEPPHHIIRRDD 22 –– AA EEUURROOPPEEAANN NNEETTWWOORRKK FFOORR EEPPIIDDEEMMIIOOLLOOGGIICCAALL AANNDD PPUUBBLLIICC HHEEAALLTTHH DDAATTAA CCOOLLLLEECCTTIIOONN OONN RRAARREE DDIISSEEAASSEESS ((PPHHAASSEE 22))

Domenica TARUSCIO Member TFRD Centro Nazionale Malattie Rare Istituto Superiore di Sanita Viale Regina Elena, 299 IT - 00161 ROME Tel.: +39 (06) 49.90.28.05 Fax: +39 (06) 49.38.71.40 E-mail : [email protected] (+ expert nominated by Italy)

AA EEUURROOPPEEAANN IINNFFOORRMMAATTIIOONN NNEETTWWOORRKK OONN PPAAEEDDIIAATTRRIICC RRHHEEUUMMAATTIICC DDIISSEEAASSEESS

Alberto MARTINI Nominated: Nicolino RUPERTO PRINTO (Paediatric Rheumatology International Trials Organisation) IRCCS Istituto Giannina Gaslini Largo Gaslini, 5 IT - 16147 GENOVA Tel.: +39 (010) 56.36.386 Fax: +39 (010) 56.36.211 E-mail: [email protected] Web page: http://www.printo.it Web page of project: www.pedistou-rheumatology.printo.it

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http://www.printo.it/

http://www.pedistou-rheumatology.printo.it/


Nicolino RUPERTO Member TFRD IRCCS G. Gaslini Pediatria II - PRINTO Largo Gaslini, 5 IT - 16147 GENOVA Tel: +39-010-382 854 or 393 425 Fax +39-010-393 324 or 393 619 E-mail: [email protected] Web page: http://www.printo.it Web page of project: www.pedistou-rheumatology.printo.it

AA EEUURROOPPEEAANN EEDDUUCCAATTIIOONNAALL PPRROOGGRRAAMMMMEE OONN RRAARREE DDIISSEEAASSEESS

Silvio GARATTINI Nominated: Rumen STEFANOV Istituto di Ricerche Farmacologiche "Mario Negri" Via Eritrea, 62 IT - 20157 MILANO Tel. : +39 (02) 39.01.41 Fax : +39 (02) 35.46.277 E-mail : [email protected]

Rumen STEFANOV Member TFRD Istituto di Ricerche Farmacologiche "Mario Negri" Via Eritrea, 62 IT - 20157 MILANO Tel. : +39 (02) 39.01.43 12 Fax : +39 (02) 35 46 277 E-mail: [email protected]

LUXEMBOURG LUXEMBOURG

RRAARREE FFOORRMMSS OOFF DDEEMMEENNTTIIAA (Completed project)

Sandrine LAVALLE Member TFRD Project coordinator Alzheimer Europe Route de Thionville, 45 LU - 2611 LUXEMBOURG Tel. : +352 (0) 29.79.70 Fax : +352 (0) 29.79.72 E-mail : [email protected]

Jean GEORGES Member TFRD Executive Director Alzheimer Europe Route de Thionville, 45 LU - 2611 LUXEMBOURG E-mail : [email protected]

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http://www.printo.it/

http://www.pedistou-rheumatology.printo.it/






NETHERLANDS NETHERLANDS

TTEEAAMM 11 –– TTRRAANNSSFFEERR OOFF EEXXPPEERRTTIISSEE OONN RRAARREE MMEETTAABBOOLLIICC DDIISSEEAASSEESS IINN AADDUULLTTSS ((PPHHAASSEE 11)) (Completed project)

TTEEAAMM 22 –– OONNGGOOIINNGG TTRRAANNSSFFEERR OOFF EEXXPPEERRTTIISSEE OONN PPRREEVVEENNTTIIOONN,, DDIIAAGGNNOOSSIISS AANNDD TTRREEAATTMMEENNTT OOFF CCOOMMMMOONN CCOOMMPPIILLAATTIIOONNSS IINN AADDUULLTTSS WWIITTHH RRAARREE MMEETTAABBOOLLIICC DDIISSEEAASSEESS ((PPHHAASSEE 22))

Harold Wessel De VALK Member TFRD Project leader Department of Internal Medicine UMC (University Medical Centre) UTRECHT Heidelberglaan 100 NL - 3584 CX UTRECHT Tel. : +31 (30) 250.63.12 Fax : +31 (30) 251.83.28 E-mail : [email protected]

SPAIN SPAIN

EENNEERRCCAA –– EEUURROOPPEEAANN NNEETTWWOORRKK FFOORR RRAARREE CCOONNGGEENNIITTAALL AANNAAEEMMIIAASS

Joan Lluís VIVES CORRONS Member TFRD Project leader Unidad de Eritropatologia Fundació Privada del Clinic per a la Recerca Biomèdica Hospital clinic i provincial de Barcelona Villaroel 170 ES - 08036 BARCELONA Tel: +34.93.227.5451 Fax : +34.93.451.5789 E-mail: [email protected]

Sara HURST Member TFRD Project coordinator Unidad de Eritropatologia Fundació Privada del Clinic per a la Recerca Biomèdica Hospital clinic i provincial de Barcelona Villaroel 170 ES - 08036 BARCELONA Tel. : +34.93.451.5950 Fax : +34.93.451.5789 E-mail: [email protected]

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UNITED KINGDOM UNITED KINGDOM

CCRREEAATTIINNGG AA EEUURROOPPEEAANN AALLLLIIAANNCCEE OOFF PPAATTIIEENNTT AANNDD PPAARRNNTT GGRROOUUPPSS FFOORR GGEENNEETTIICC SSEERRVVIICCEESS AANNDD IINNNNOOVVAATTIIOONN IINN MMEEDDIICCIINNEE ((EEAAGGSS))

Kent ALASTAIR Member TFRD Genettic Interest Group Unit 4D, Leroy House, 436 Essex Road UK - N1 3QP LONDON Tel. : +44 (207) 704.31.41 Fax : +44 (207) 359.14.47 E-mail : [email protected]

CCAAUUSSEE –– CCHHAARRGGEE AASSSSOOCCIIAATTIIOONN AANNDD UUSSHHEERR SSYYNNDDRROOMMEE IINN EEUURROOPPEE (Completed project)

Richard HAWKES Member TFRD Director Sense International 11 - 13 Clifton Terrace Finsbury Park UK - N4 3SR LONDON Tel : +44 (207) 272.7774 Fax : +44 (207) 272.6021 E-mail : [email protected]

EEUURROOCCAATT 11 –– SSUURRVVEEIILLLLAANNCCEE OOFF CCOONNGGEENNIITTAALL AANNOOMMAALLIIEESS IINN EEUURROOPPEE ((PPHHAASSEE 11)) (Completed project) EEUURROOCCAATT 22 ––SSUURRVVEEIILLLLAANNCCEE OOFF CCOONNGGEENNIITTAALL AANNOOMMAALLIIEESS IINN EEUURROOPPEE ((PPHHAASSEE 22))

Helen DOLK Member and Deputy TFRD Faculty of Life and Health Sciences University of Ulster at Jordanstown Shore Rd, Newtonabbey UK - BT37 0QB CO ANTRIM NORTHEN IRELAND Tel. : +00 44 ./28.90.368540 Fax : +00 44 /28.90.368341 E-mail : [email protected]

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MORBIDITY AND MORTALITY WORKING PARTY (MMWP) LEADER AND DEPUTY

Jennifer ZEITLIN Leader MMWP Epidiemology Research Unit on Perinatal and Women's Health INSERM U 149 123, Bd de Port Royal FR - 75014 PARIS Tel. : +33 (1) Fax : +33 (1) E-mail: [email protected] (+ project leader HMP PERISTAT 1 &2)

Herman VAN OYEN Deputy MMWP Ministère des Affairs Sociales, de la Santé Publique et de l'Environnement Institut Scientifique de la Santé Publique Louis Pasteur Department of Epidemiology Rue J. Wytsmanstraat, 14 BE - 1050 BRUXELLES Tel.: +32 (-2) -642 57 92 (50 25) Fax: +32 (-2) 642.54.10 E-mail: [email protected] E-mail 2: [email protected]

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EUROPEAN COMMISSION

Heads of Unit SANCO/C

Matti RAJALA, Head of Unit C4 Nominated: Dadi EINARSSON Dadi EINARSSON Member TFRD

SANCO/C2

John F. RYAN, Head of Unit Nominated: Frédéric SICARD Frédéric SICARD Member TFRD Antoni MONTSERRAT Member TFRD

ESTAT

Directorate D: Single Market, Employment and Social Statistics

Marleen DE SMEDT, Head of Unit D6: Health and Food Safety Nominated: Didier DUPRE Didier DUPRE, Unit D6 Member TFRD Sabine GAGEL, Unit D6 Observer TFRD Lucian AGAFITEI, Unit D6 Observer TFRD

DG RTD

Directorate F : Health

Alain VANVOSSEL, Head of Unit F2: Major diseases Nominated: Catherine BERENS Catherine BERENS, Unit F2: Major diseases Member TFRD

DG ENTR

Directorate F - Single market: management & legislation for consumer goods (Task Force Rare Diseases)

Peter ARLETT, Unit F2: Pharmaceuticals Member TFRD

European Agency for the Evaluation of Medicinal Products (EMEA)

meeting of the task force on rare diseases -...

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