We wish to thank all those who responded to the consultation, and will take all the responses to the consultation into account in future work. The Commission plans to bring forward specific proposals for addressing these issues later in 2008.
- Patients and their families
- National patient organisations
- International patient organisations
- Member states (national authorities)
- International and European organisations
- Commercial organisations, companies and their associations
- Universities and other experts
- Reference centres
- Researchers
- Others
| Stakeholder | Function | Organisation | Country | Date | |
| R-003 | Dominique Joux | FR | 29.11.2007 | ||
| R-008 | Fabrizio Gavazza | IT | 03.12.2007 | ||
| R-015 | ES | 18.12.2007 | |||
| R-017 | Marielle lacaut | FR | 19.12.2007 | ||
| R-021 | Danielle et Jean Miron | FR | 23.12.2007 | ||
| R-022 | ES | 24.12.2007 | |||
| R-024 | M. PICAMAL René | FR | 28.12.2007 | ||
| R-025 | Merja Vuori | FI | 29.12.2007 | ||
| R-026 | Vania Dobreva | BG | 01.01.2008 | ||
| R-027 | Claudine Goze-weber | FR | 03.01.2008 | ||
| R-029 | IT | 07.01.2008 | |||
| R-031 | 13.01.2008 | ||||
| R-043 | Francesco Tomasello | IT | 18.01.2008 | ||
| R-046 | Sylvie Hulin | FR | 19.01.2008 | ||
| R-057 | Anna Jakubowska | PL | 25.01.2008 | ||
| R-059 | Zofia Smorga | PL | 26.01.2008 | ||
| R-060 | Fargeas Nadia | FR | 26.01.2008 | ||
| R-068 | M. et Mme Leroy | FR | 29.01.2008 | ||
| R-069 | Christiane Lupo | FR | 30.01.2008 | ||
| R-071 | José Henrique | PT | 30.01.2008 | ||
| R-088 | Lucia Lamonarca | IT | 04.02.2008 | ||
| R-097 | Mr et Mme Pichon de Bury | FR | 05.02.2008 | ||
| R-101 | Anne et Christian Marguillier | FR | 05.02.2008 | ||
| R-129 | Rea Bernardino | IT | 08.02.2008 | ||
| R-143 | Jean Rodrigues | FR | 10.02.2008 | ||
| R-144 | Sabine et Thierry Canepa Yvette et Claude Fau |
FR | 10.02.2008 | ||
| R-146 | Marie-Marguerite Haeffele | FR | 11.02.2008 | ||
| R-164 | Roland Bigey | FR | 11.02.2008 | ||
| R-166 | Sylwia W?grzynowska | PL | 11.02.2008 | ||
| R-176 | Sophie Heilbrunn | FR | 12.02.2008 | ||
| R-182 | Catherine Tarel-Berlemont | FR | 12.02.2008 | ||
| R-192 | Jolanta Kuc | PL | 12.02.2008 | ||
| R-200 | Leszek Musz | PL | 12.02.2008 | ||
| R-207 | Renata Chrusciel | PL | 12.02.2008 | ||
| R-215 | Josiane Berset | CH | 15.02.2008 | ||
| R-220 | Mireille Santacreu | FR | 15.02.2008 | ||
| R-227 | Mary Dorothy Clarke | UK | 15.02.2008 | ||
| R-229 | Evelyne Sheffey | FR | 15.02.2008 | ||
| R-244 | Céline Heintze | l'association HTAP France | FR | 13.02.2008 | |
| R-248 | Monika D?mbska | PL | 13.02.2008 | ||
| R-265 | Paolo Camagni | IY | 13.02.2008 | ||
| R-283 | Mariolina Barbera | IT | 13.02.2008 | ||
| R-287 | Isabelle Meurant | CH | 13.02.2008 | ||
| R-292 | Liisa and Jari-Matti Vuorio | FI | 13.02.2008 | ||
| R-320 | Marlène Rosset | 14.02.2008 | |||
| R-328 | Alice Miron | FR | 14.02.2008 | ||
| R-338 | Taina Hickey | FI | 14.02.2008 | ||
| R-340 | Agnieszka i Edmund Fary? | PL | 14.02.2008 | ||
| R-387 | Violette Devanthery | FR | 14.02.2008 | ||
| R-397 | Nadine Truffy | FR | 14.02.2008 | ||
| R-399 | Axel van der Mersch | LU | 14.02.2008 | ||
| R-410 | Isabel Jiménez | ES | 14.02.2008 | ||
| R-414 | Sarah Cornaz | FR | 14.02.2008 |
National patient organisations
| Stakeholder | Function | Organisation | Country | Date | |
| R-001 | Arsène Losson | Vice-Président | Association HNPCC France | FR | 26.11.2007 |
| R-002 | Françoise PRAT | AMADYS | FR | 28.11.2007 | |
| R-005 | Nicole Baraton | AMADYS | FR | 30.11.2007 | |
| R-011 | Jurado Chacón | President | Asociación Andaluza de Pacientes con Síndrome de Tourette y Trastornos Asociados | ES | 08.12.2007 |
| R-016 | Michelle Gonsalves | President of FLAM | Association FLAM (France Lymphangio- léiomyomatose) | FR | 19.12.2007 |
| R-030 | Helga Süli-Vargha DSc | Chairman | Hungarian VHL Society | HU | 07.01.2008 |
| R-031 | Dr. Andreas Bächli | President | Schweizerischen Prader-Willi-Syndrom-Vereinigung | CH | 12.01.2008 |
| R-033 | Federación de Ataxias de España | ES | 14.01.2008 | ||
| R-034 | Gilbert Fuzillier | President | l'AFPCA = Association Francophone contre la Polychondrite Atrophiante | FR | 14.01.2008 |
| R-036 | Stephanie S., Weinreich, Ph. D., Marcel Timmen | Research advocacy officer General Director | Dutch Association for Neuromuscutar Diseases | NL | 07.01.2008 |
| R-039 | AMPASTTA (Asociación Madrileña de Pacientes con Síndrome de Gilles de la Tourette y Trastornos Asociados | ES | 15.01.2008 | ||
| R-041 | Dan Dorica | President RPWA/ ANBRaRo | Romanian National Alliance for Rare Diseases - RONARD | RO | 16.01.2008 |
| R-042 | Nicole Champavier | President | Association de l'Ostéogenèse Imparfaite | FR | 16.01.2008 |
| R-044 | A . F . M . B . D Association Française de la Maladie de Blackfan Diamond | FR | 18.01.2008 | ||
| R-048 | Ursula Huffer | Corporate director | A . F . M . B . D HAE e.V. Deutschland | DE | 21.01.2008 |
| R-049 | Balthasar Schaap | Autosomaal Dominante Cerebellaire Ataxie Vereniging Nederland | NL | 21.01.2008 | |
| R-052 | M-A Voelckel (PhD-MPCG) | President | l'AFCG - l'Association Française des Conseillers en Génétique (AFCG)/ Département de Génétique Médicale Hôpital d'Enfants de la Timone | FR | 23.01.2008 |
| R-057 | Donatella e Marco Sessa | L’A.I.S.Ac. Associazione per l’Informazione e lo Studio sulla Acondroplasia | IT | 24.01.2008 | |
| R-058 | Le bureau de l'AFSED | Association Française des Syndromes d’Ehlers-Danlos A.F.S.E.D | FR | 25.01.2008 | |
| R-062 | Francoise Sarret | Association pour la Prévention, le Traitement et l’Etude des Polyposes Familiales | FR | 27.01.2008 | |
| R-072 | Junta directiva de la Asociación Galega de Ataxias | ES | 30.01.2008 | ||
| R-073 | Associazione MIA Onlus Associazione Italiana Miastenia Onlus. | IT | 30.01.2008 | ||
| R-074 | David Abeln | Chairman Dutch PKU association | Nederlandse Phenylketonurie Vereniging | NL | 31.01.2008 |
| R-075 | Sven Fandrup | Chairman | Immunodeficiency Association, Denmark | DK | 31.01.2008 |
| R-081 | Eva Hütter & Gerald Fischer | Selbsthilfegruppe Lungenhochdruck | DE | 01.02.2008 | |
| R-085 | Adeltraud Müller | Leiterin | Selbsthilfegruppe "Leben mit Behcet – Deutschland" | DE | 03.02.2008 |
| R-087 | Bodil Davidsen | Social worker | Landsforeningen for Marfan Syndrom | DK | 04.02.2008 |
| R-089 | Inès de Leudeville | President | Association Gêniris | FR | 04.02.2008 |
| R-091 | Dr Amy Hunter | Senior Policy and Research Manager | Genetic Interest Group | UK | 04.02.2008 |
| R-092 | Luc et Rosie Matthysen | HTAP Belgique Hypertension artérielle Pulmonaire | BE | 04.02.2008 | |
| R-093 | Christine Jurvillier | AMADYS : Association des Malades Atteints de DYStonie | FR | 04.02.2008 | |
| R-100 | D.Stoyanov | Chairman | Association of the Acromegaly Diseased in Bulgaria – "Hope for life" | BG | 05.02.2008 |
| R-103 | Thomas Heuyer | Délégué général | Maladies Rares Info Services Chargé de la communication de la Plateforme Maladies Rares | FR | 06.02.2008 |
| R-105 | FEDER Comunidad Valenciana | Headquarters of the Spanish Federation of Rare Diseases in Valencia | ES | 07.02.2008 | |
| R-109 | Lydia Debar | President | Association Histiocytose France | FR | 07.02.2008 |
| R-113 | Nuria Belén Aguilera Arenas | Psicóloga | Asociación Andaluza contra la Fibrosis Quística | 07.02.2008 | |
| R-115 | Alan Summerside | Development Director | The Thalidomide Trust | UK | 08.02.2008 |
| R-116 | Roman Michalik Maciej Czy? |
Stowarzyszenie rodzin z chorob? fabry'ego | PL | 08.02.2008 | |
| R-118 | Jean-Marc Lallemand | President | ADCP – L'Association de patients ayant Dyskinesie Ciliaire Primitive | FR | 05.02.2008 |
| R-122 | Philippe BRUN | President | ASSYMCAL – Association des Malades Porteurs du Symdrome de McCune-Albright de Dysplasie Fibreuse des Os | FR | 29.01.2008 |
| R-123 | Claudine GRANCHER Daniele JACQUES |
President Secretary |
Association Francaise des Fibromyalgiques | FR | 29.01.2008 |
| R-124 | Valerie PROISY | President | Association Syndrome de Wiliams Midi-Pyrenees & Languedoc Roussillon | FR | 30.01.2008 |
| R-125 | Jeannine FINET | Association "SURRENALES" | FR | 01.02.2008 | |
| R-130 | Mr Raymond SOUQUI | Vice-président de l'association | Association "SURRENALES" | FR | 01.02.2008 |
| R-132 | Dr.ssa Anna Maria Nardi Prof.Pierluigi Zoccolotti |
President Vice-President |
L’Associazione "IL CIGNO" Onlus | IT | 08.02.2008 |
| R-133 | B. Piastra | President | L'ASSOCIATION - Wegener Infos et Vascularites | FR | 08.02.2008 |
| R-134 | Jean-Marc Pittoni | President | Association des Malades d’Algies Pudendales | FR | 08.02.2008 |
| R-138 | Danielle Montfort | Association AMADYS-LFCD | FR | 09.02.2008 | |
| R-139 | Paulette Morin | President | Association Française du Syndrome de Marfan | FR | 09.02.2008 |
| R-141 | Leszek Michalik | Stowarzyszenie Rodzin zChorob? Fabry'ego | PL | 10.02.2008 | |
| R-142 | Wioleta ?abno | Stowarzyszenie Chorych na MPS i Choroby Rzadkie | PL | 10.02.2008 | |
| R-145 | Vinciane Berckmans | Présidente | H.A.E. Belgium (Hereditary AngioEdema) | BE | 10.02.2008 |
| R-150 | Juliette Dieusaert | AFAF | FR | 11.02.2008 | |
| R-152 | Sandrine Lefebvre | Secrétariat | AFH Association Française des Hémophiles | FR | 11.02.2008 |
| R-153 | Krzysztof Bajer | Stowarzyszenie Chorych na MPS i Choroby Rzadkie | PL | 10.02.2008 | |
| R-157 | Christiane Karakoglou | Vice-présidente | l’AFPCA (association francophone contre la Polychondrite Chronique Atrophiante) | FR | 11.02.2008 |
| R-158 | Malgorzata Kaflik | Polish Society of MPS and Related Diseases | PL | 11.02.2008 | |
| R-162 | Melanie Gallant-Dewavrin | Director | HTAPFrance | FR | 11.02.2008 |
| R-163 | Gérard Brebant | Member | Association ASTB | FR | 11.02.2008 |
| R-165 | Chantal Lecerf | Member | Association de Malades Atteints de DYStonie (AMADYS-LFCD) | FR | 11.02.2008 |
| R-167 | Judith Hamann | Vorsitzende | Elternhilfe für Kinder mit Rett-Syndrom in Deutschland e.V | DE | 11.02.2008 |
| R-168 | Britt Leopold | Executive director | The Swedish Cystic Fibrosis Association | SU | 11.02.2008 |
| R-169 | Philippe Duvivier | Association Française autour des Arthrogryposes (Alliance Arthrogrypose) | FR | 11.02.2008 | |
| R-170 | Jonathan Cottignies | President | A.A.D.C | FR | 11.02.2008 |
| R-172 | Birgit Dembski | Manager for health policy and therapeutic support | German Cystic Fibrosis association | DE | 11.02.2008 |
| R-174a R-174b |
Torben Grønnebæk | Chairman | The Danish Wilson Patient Association | DA | 12.02.2008 |
| R-175 | Micheline Detour | Secretary | ASL | FR | 12.02.2008 |
| R-177 | Aneta Trochimiuk | Stowarzyszenie Chorych na Mukopolisacharydoz? i Choroby Pokrewne | PL | 12.02.2008 | |
| R-178 | Maria Widalska | Stowarzyszenie Chorych na Mukopolisacharydoz? i Choroby Pokrewne | PL | 12.02.2008 | |
| R-183 | Johannes Flensted-Jensen Charlotte Fuglsang |
President CEO |
Danmarks Lungeforening | DK | 12.02.2008 |
| R-184 | Claude Fiévet | Vice- Président CEO |
HTAP FRANCE - Hypertension Artérielle Pulmonaire | FR | 12.02.2008 |
| R-185 | Catherine Faou | Présidente CEO |
AFGS - l'Association Française du Gougerot Sjögren et des syndromes secs | FR | 12.02.2008 |
| R-186 | Martine Colmant | Présidente CEO |
AFGS - l'Association Française du Gougerot Sjögren et des syndromes secs | FR | 12.02.2008 |
| R-188 | Dr. Philippe Hanriat | Secrétaire A.SL | Association Strümpell-Lorrain (HSP-France) | FR | 12.02.2008 |
| R-189 | Christophe Duguet | Association Française contre les Myopathies (French Muscular Dystrophy Association) | FR | 12.02.2008 | |
| R-190 | Pawe? Wójtowicz | Prezes Zarz?du | Fundacja Pomocy Rodzinom i Chorym na Mukowiscydoz? MATIO | PL | 12.02.2008 |
| R-193 | Ron Overton | Director | Rett Syndrome Association UK | UK | 12.02.2008 |
| R-196 | Maria Kopecka | Stowarzyszenie Chorych na Mukopolisacharydoz? i Choroby Pokrewne | PL | 12.02.2008 | |
| R-197 | Françoise Antonini | Déléguée Générale | Alliance Maladies Rares - Plateforme Maladies Rares | FR | 12.02.2008 |
| R-199 | Isabelle Marchetti-Waternaux | President | Association de Porteurs d'Anomalies Chromosomiques | FR | 11.01.2008 |
| R-204 | Jean-Paul Gagnère | Président | Association suisse-romande pour le syndrome Gilles de la Tourette | CH | 12.02.2008 |
| R-205 | Rosa Sánchez de Vega | President | FEDER - Federación Española De Enfermedades Raras (Spanish Alliance for Rare Diseases) | ES | 12.02.2008 |
| R-208 | Vladimir Tomov | National Alliance of People with Rare Diseases - Bulgaria | 12.02.2008 | ||
| R-209 | Jane Stanton-Roberts | Secretary | The Dancing Eye Syndrome support trust in the UK | UK | 12.02.2008 |
| R-210 | Francois Hafner | President | Association Nationale Spina Bifida Handicaps Associés | FR | 19.02.2008 |
| R-211 | Christian Foucaux | President | Prader-Willi France | FR | 15.02.2008 |
| R-213 | Denise Laporte | A.F.S.A. Presidence – l'Assosiation Francophone du Syndrome d'Angelman | FR | 15.02.2008 | |
| R-217 | Lea Fallourd | Ligue contre Myopathie | FR | 15.02.2008 | |
| R-219 | Jean-Pierre Blois | President | Association Strumpell-Lorrain | FR | 15.02.2008 |
| R-222 | Pierrette Grange | President | Les Feux Follets | FR | 15.02.2008 |
| R-223 | Prof. Michel Roussey | President | AFDPHE – Association Francaise pour le Depistage et la Prevention de Handicaps de l'Enfant | FR | 15.02.2008 |
| R-226 | Claudine Coline | President | Association Surrenales | FR | 15.02.2008 |
| R-232 | Françoise Tissot | President | Association contre les Maladies Mitochondriales | FR | 15.02.2008 |
| R-233 | Cor Oosterwijk | Director | VSOP – Dutch genetic alliance | NL | 15.02.2008 |
| R-235 | Jerome Ries | Rechtsanwalt | Bundesverband Kleinwunschige Menschen und ihre Familien e.V. | DE | 15.02.2008 |
| R-236 | Torben Grønnebæk, Lene Jensen |
President CEO |
Rare Disorders Denmark | DE | 13.02.2008 |
| R-237 | Les membres du bureau d’AVML | Association Vivre Mieux le Lymphœdème | FR | 13.02.2008 | |
| R-241 | Delacombaz Léon | Président | APEP - Association de Parents d’Enfants Phénylcétonuriques | CH | 13.02.2008 |
| R-242 | Etienne Hameau | Président de France Lafora | Association France LAFORA | FR | 13.02.2008 |
| R-243 | Lykke Rehder | Chairman | The Danish Ehlers-Danlos Society | DK | 13.02.2008 |
| R-245 | Elisabeth Wallenius | President | Swedish Association of Rare Disorders | SU | 13.02.2008 |
| R-247 | Dr. Rainald von Gizycki Dr. Claus Gehrig |
Chairman | Pro Retina Deutschland e.V. | DE | 13.02.2008 |
| R-249 | H.K. Meutgeert | Executive Director | VKS - Dutch Umbrella organization for metabolic diseases | NL | 13.02.2008 |
| R-250 | William C Owen | Niemann-Pick Disease Group | UK | 13.02.2008 | |
| R-255 | Stella Peckary | Österreichische Rett-Syndrom Gesellschaft | DE | 13.02.2008 | |
| R-258 | Merja Monto | Coordinator | Finnish Association of People with Mobility Disabilities (FMD) Unit of Unknown and Rare Groups - Lahti Rehabilitation Centre | FI | 13.02.2008 |
| R-262 | Marianna Lambrou | President | Greek Alliance for Rare Diseases and Tuberous Sclerosis Association of Greece | GR | 13.02.2008 |
| R-267 | Hartmut Fels | ACHSE e.V. - Allianz Chronischer Seltener Erkrankungen - German Alliance for Rare Diseases – c/o DRK-Kliniken Westend | DE | 13.02.2008 | |
| R-268 | Leila Raninen | Finnish Marfan Association | FI | 13.02.2008 | |
| R-269 | Helena Ylikyla-Leiva | Chief Executive officer | The Finnish MS Society | FI | 11.02.2008 |
| R-270 | Mette Spangsberg | Danish Association of Dystonia | DA | 13.02.2008 | |
| R-271 | Dr Janet Maxwell | PH Consultant | SW SCG | UK | 13.02.2008 |
| R-272 | Annie Brønnum | Hjerteforeningen - Danish Heart Foundation | DA | 13.02.2008 | |
| R-275 | Martine Gaudy | Administrateur à l’AFSR | Association française du syndrome de Rett | FR | 13.02.2008 |
| R-281 | Association du syndrome de Williams et Beuren - Ile de France | FR | 13.02.2008 | ||
| R-285 | Gilles Boustany | Directeur général | Fédération des Maladies Orphelines | FR | 13.02.2008 |
| R-286 | Dr Susan Walker-Date | Vice Chair | Rett Syndrome Association UK | UK | 13.02.2008 |
| R-289 | Olivier de Compiègne | Président | Xtraordinaire | FR | 13.02.2008 |
| R-290 | Bianca Piantanida Pizzera | Segretario AIP | Associazione immunodeficienze primitive- onlus | IT | 13.02.2008 |
| R-293 | Beate Rasp and Eva Kitir | German Morbus Wilson patient organisation | DE | 13.02.2008 | |
| R-294 | Gabor Pogany Ph.D. | Executive vice president | HUFERDIS Hungarian Federation of People with Rare and Congenital Diseases - Rare Diseases Hungary | HU | 13.02.2008 |
| R-295 | Tiffany House, BA, MA | Director | AMDA is a national Pompe disease patient organization | USA | 13.02.2008 |
| R-296 | Csató Zsuzsa Csupaszívek Társasága | The Opinion of the Hungarian Society of People with Golden Heart | HU | 13.02.2008 | |
| R-297 | Pné Bojtor Zsuzsanna | elnök, MWSzT | Hungarian Williams Syndrome Association | HU | 13.02.2008 |
| R-298 | Stanis?aw Ma?kowiak | Prezes | Federacja Pacjentów Polskich | PL | 13.02.2008 |
| R-299 | Miguel Ángel Rodrigo Jiménez |
Delegado en Catalunya de SIMA | ES | 13.02.2008 | |
| R-300 | Giorgio Pioli | Presidente | Associazione Intolleranza Fruttosio Onlus (AIF Onlus) | IT | 13.02.2008 |
| R-301 | Ulrike Holzer Stellvertr. | Vorsitzende | Selbsthilfegruppe Ektodermale Dysplasie e.V. | DE | 13.02.2008 |
| R-302 | Association Autour des Williams | FR | 14.02.2008 | ||
| R-312 | Christian Ballouard | Président | Association VASI (Vaincre l’Adénylo Succinase par l’Information) | FR | 14.02.2008 |
| R-313 | Myeloma UK | UK | 14.02.2008 | ||
| R-315 | Assessorato alla Sanità – Direzione Piani e Programmi Socio Sanitari | IT | 14.02.2008 | ||
| R-317 | Cinzia Sacchetti | President | Nazionale A.Fa.D.O.C. onlus associazione famiglie di soggetti con deficit di ormone della crescita ed altre patologie | IT | 14.02.2008 |
| R-318 | Olivia Niclas | President | Association Française des Dysplasies Ectodermiques | FR | 14.02.2008 |
| R-321 | François Lefebvre | President | Association Française du Syndrome de Gilles de La Tourette (AFSGT) | FR | 14.02.2008 |
| R-326 | Kaarina Laine-Häikiö | Managing Director | The Finnish Rheumatism Association | FI | 14.02.2008 |
| R-333 | Mogens Brandt Clausen Birthe Byskov Holm, |
chair vicechair |
Danish Ostegenesis Imperfecta Society | DA | 14.02.2008 |
| R-344 | Debra Belgium VZW | BE | 14.02.2008 | ||
| R-348 | Claudie Durand | Member | Association Sclérose Tubéreuse de Bourneville (ASTB) | FR | 14.02.2008 |
| R-352 | Dr. Lucia Monaco | Chief Scientific Officer | Fondazione Telethon | IT | 14.02.2008 |
| R-358 | Jacques Monnet | President | Association Incontinentia Pigmenti France | FR | 14.02.2008 |
| R-359 | Jean Lafond | President | Vaincre la Mucoviscidose | FR | 14.02.2008 |
| R-369 | Maria Elisabetta Villa | Gruppo di Sostegno DBA Italia Onlus | IT | 14.02.2008 | |
| R-371 | Dott.ssa Annapia Verri | IRCCS. Fondazione Istituto Neurologico C. Mondino | IT | 14.02.2008 | |
| R-377 | Pavel Seeman - steering committee of CMT Czech Republic | Patient organisation Charcot Marie Tooth Association | CZ | 14.02.2008 | |
| R-380 | Kostas Theodosakis | President | Hellenic Cystic Fibrosis Association | GR | 14.02.2008 |
| R-382 | Sari Tervonen | Toiminnanjohtaja | Epilepsialiitto ry | FI | 14.02.2008 |
| R-386 | Laure Camborieux | Présidente | Association MAIA Soutien aux couples infertiles Association Nationale |
FR | 14.02.2008 |
| R-390 | Présidente | Association Marie-Thérèse MERNY | FR | 14.02.2008 | |
| R-391 | Dr. Paola Zotti | President | DEBRA Italy | IT | 14.02.2008 |
| R-392 | Marie-Françoise Méresse | Déléguée Régionale | Alliance Maladies Rares pour la Champagne-Ardenne et de Prader-Willi France pour Champagne-Ardenne et Nord-Picardie | FR | 14.02.2008 |
| R-393 | Gerd Ulrich Heuer | Mitglied | Bundesselbst-hilfevereinigung 'Multiple kartilaginäre Exostosen (Osteochondrome)' e.V | DE | 14.02.2008 |
| R-395 | Dr. rer. nat. Bernd Quadder | President | Deutsche Sarkoidose-Vereinigung e.V. - German Sarcoidosis Association | DE | 14.02.2008 |
| R-398 | Rett Syndrome Association UK | UK | 14.02.2008 | ||
| R-400 | Françoise Tissot | AMMi - Association contre les maladies mitochondriales française | FR | 14.02.2008 | |
| R-401 | ANPSA | FR | 14.02.2008 | ||
| R-411 | Corinne Lagrafeuil | President | Association Polykystose France - French Chapter of the PKD Foundation | FR | 14.02.2008 |
| R-412 | M. Giuseppe Pajardi | President | Aidweb | IT | 14.02.2008 |
| R-415 | Natalija Stošicki | President | Slovenian PKU Association | SL | 14.02.2008 |
| R-417 | Christine Chirossel (parent et adhérent- délégué régional) Christel Nourrissier |
President | Association Prader Willi France Eurordis/Prader Willi France |
FR | 18.02.2008 |
| R-425 | Stamatina Manolias | Member of the board of directors of the association | Association of people with genetic disorders "To Mellon" | GR | 19.02.2008 |
| R-433 | Jose Marty | President | A.M.A.R.M.Y.U.L. – Association Maladie Rare Myoclonique Unverricht Lundborg | FR | 15.02.2008 |
| R-435 | Teija Salokorpi | Member | Finnish network of RD patients organisations | FI | 17.02.2008 |
| R-436 | Dott Fabrizio Seidita | President | AIG – Associazone Italiana Glicegonosi, Associazione di Volontariato ONLUS di Diritto | IT | 17.02.2008 |
| R-437 | Comite de Liaison et d'Action des Parents d'Enfants et d'Adultes | FR | 28.02.2008 | ||
| R-441 | Nathalie Triclin | President | Association Des Patients de la Maladie de Fabry | FR | 28.02.2008 |
| R-442 | Christine Perrier | AVML - Association Vivre Mieux le Lymphoedeme | FR | 28.02.2008 | |
| R-443 | PD Dr. med. Martin Merkel Prof. Dr. med. Stephan vom Dahl |
Vorsitzender der ASIM Prasident der ASIM 2009 |
|||
| R-444 | Le bureau AVLM | Association AVML - Association Vivre Mieux le Lymphoedeme | FR | 28.02.2008 | |
| R-445 | Bettina Vogel | Groupe de Travail Maladies Rar | LU | 21.02.2008 | |
| R-447 | Maciej Czy? | Stowarzyszenie rodzin z chorob? fabry'ego | PL | 08.02.2008 | |
| R-448 | Ewa Rogozi?ska | Stowarzyszenie rodzin z chorob? fabry'ego | PL | 08.02.2008 | |
| R-449 R-449b R-449 |
Anna Winska Piotr Szulc Agniszka Szulc |
Stowarzyszenie Chorych na Mukopolisacharydoz? i Choroby Pokrewne | PL | 14.02.2008 | |
| R-450 | Pawel Oswiecinski | Stowarzyszenie Rodzin z Choroba Gauchera | PL | 14.02.2008 | |
| R-451 | Pawel Chor??y | Fundacja Gajusz | PL | 14.02.2008 | |
| R-452 | Dorota Nawrot Rudnicka Jan Kawalec |
Stowarzyszenie Marfan Polska | PL | 14.02.2008 | |
| R-459 | Iwona Ziobro-Boro?, Teresa Zajda, S?awomir Weihs, Krzysztof Wiktor, Wac?awa Werpachowska, Lidia Witos, Aleksandra Truskolawska, Ma?gorzata Tomaszczyk, Katarzyna Topuszek, Monika So?tysik, Marta Stefanek, Wies?awa Stankiewicz, Michal Rzepka, Renata Gwozdowska-Rutka, Renata Ruci?ska, Marta ?ukasik, Agnieszka Pietrucha, Adam Pawlikowski, Hanna Pinkowska, Iwona Ostrowska, Barbara Nowicka, Renata Michalik, Magdalena Maciejewska-Sordyl, Agnieszka Mokrzycka, Ma?gorzata Magowska, Mariola Milewska, Marek Libera, Anna Lamprycht, Krzysztofa Laska, Ma?gorzata Ku?, A. Kost, Jan Krzy?ko, J. Kulisiak-Ka?mierczak, A. Korajda, Ewa Juskowiak-Krystkowiak, M. Kulesza, D. Komejsza, J. Jab?o?ski, B. Julkowska, C. Jopek, A. Jarz?cka, M. J?drzejewski, V. Jagie??o, A. Garczowska, A. Grzenkowicz, B. Dombrzalski, A. Dropi?ski, K. Cicha, Z. Czerska, J. Binkiewicz, M. Bie?, A. Bargman, B. Baranowska, T. Szymczak-Idziak, U. Czarnota, E. Sikora, T. Ma?kowiak, M. Matczak, R. Maciejewski, H. Maciejewska | Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi "GEN" | PL | 14.02.2008 | |
| R-460 R-460b R-460c |
K. Kapturczak-Zakrzewska, E. Czekalska, D. Reczy?ska, A. Roma?ska, K. Mazurkiewicz, B. KAPTURCZAK, Teresa Matulka, Justyna Matulka, Anna Pruszy?ska, Krzysztof Santarek, Janusz Sztankiewicz, A. Santarek, K. SOSINSKI, W. SOSINSKA, B. SOSINSKA, P. SZTANKIEWICZ, N. Piechoci?ska, B. KAPTURCZAK, M. MUSIELAK, Ewa Molik, Jolanta Szcezesnik, A. Bozek | MPS I Choroby Rzadkie | PL | 14.02.2008 |
International patient organisations
| Stakeholder | Function | Organisation | Country | Date | |
| R-004 | Vitaliy Matyushenko | President of Foundation | Children with SMA | UA | 29.11.2007 |
| R-014 | Denis Strangman, Kathy Oliver | IBTA Chair IBTA Secretary |
International Brain Tumor Aliance | UK | 16.12.2007 |
| R-032 | Professor Jean-Jacques Cassiman | The coordinator | EuroGentest - Center Human Genetics | BE | 14.12.2007 |
| R-038 | Dr WW de Herder, MD PhD | the Chairman of ENETS | ENETS, European Neuroendocrine Tumor Society | 15.01.2008 | |
| R-051 | Bruno Kopp | President | PHA Europe – Pulmonary Hypertension Association Europe | DE | 22.01.2008 |
| R-055 | Stuart Tanner | Emeritus Professor of Paediatrics | EuroWilson Consortium | UK | 24.01.2008 |
| R-059 | Jean Rialland | EFAPH President | EFAPH (European Federation of Association of Patients with Haemochromatosis) | 26.01.2008 | |
| R-061 | Paul Pyck | FEWS secretary | European Federation of all national associations of Williams Syndrome | 27.01.2008 | |
| R-077 | Lia van Ginneken-Noordman | Secretary | European Myeloma Platform (EMP) | BE | 31.01.2008 |
| R-080 | Laurence Warren | President | Alfa Europe Federation e.V - European Federation for Alpha1 Antitrypsin Deficiency | IE | 01.02.2008 |
| R-083 | Elsa Aimone | A.R.A.I.T - un’ associazione internazionale | IT | 01.02.2008 | |
| R-094 | Robert Schäfer | Myeloma Euronet Secretariat | 04.02.2008 | ||
| R-098 | Anna Kole | Research Assistant | RDTF Secretariat Orphanet | 05.02.2008 | |
| R-107 | Dr. Androulla Eleftheriou | Executive Director | Thalassaemia International Federation | 07.02.2008 | |
| R-108 | Karen AIACH | President / Chairman | Alliance SANFILIPPO | 07.02.2008 | |
| R-111 | Mitchell Messer / Ulrica Sterky | President | Cystic Fibrosis Worldwide | 07.02.2008 | |
| R-114 | David Watters | Executive Director | IPOPI - International Patient Organisation for Primary Immunodeficiencies | 08.02.2008 | |
| R-116 | Marie-Claude Boiteux | President | CUTIS LAXA Internationale | 30.01.2008 | |
| R-119 | Marie-France Zanetti | President | Association SCI (Syndrome de Cohen International) | 05.02.2008 | |
| R-135 | Anne Henrion | Association Neurofibromatoses et Recklinghausen | FR | 09.02.2008 | |
| R-137 | Harald Niemann | Vice Chairman | GBS Initiative e.V. | DE | 09.02.2008 |
| R-148 | Paul A.N. Kok | President | EPOS - European Association of Patiënts Organisations of Sarcoïdosis and other Granulatumous Disorders | NL | 11.02.2008 |
| R-149 | Caroline van Heesewijk | Vice President | European Chromosome 11 Network | NL | 11.02.2008 |
| R-151 | Claude Andrieux | Présidente | Inflam'oeil | FR | 11.02.2008 |
| R-161 | Christina Fasser Dr. Rainald von Gizycki |
President | Retina International | 11.02.2008 | |
| R-173 | Cystic Fibrosis Europe e.V. | 12.02.2008 | |||
| R-228 | Claudine Goze-Weber | European Tarlov Cyst Alliance | FR | 15.02.2008 | |
| R-238 | J.G.Loeber | President | ISNS - The International Society for Neonatal Screening | 13.02.2008 | |
| R-251 | Yvonne Jousten | Présidente Co-Fondatrice Co-Fondatrice Vice-Présidente |
Association Belge du Syndrome de Marfan European Marfan Support Network International Federation of Marfan Syndrome Organisations RaDiOrg.Be Rare Disorders Organisation Belgium |
BE | 13.02.2008 |
| R-276 | Tsveta Schyns, PhD | Secretary General | ENRAH - European Network for Research on Alternating Hemiplegia | 13.02.2008 | |
| R-308 | Stuart Elborn | President | European Cystic Fibrosis Society | 14.02.2008 | |
| R-319 | DEBRA Europe | 14.02.2008 | |||
| R-327 | Séverine Trouillet | European Haemophilia Consortium EU representation office | 14.02.2008 | ||
| R-329 | Helen Segura | ENERCA Project Manager | Hospital Clinic i Provincial de Barcelona | 14.02.2008 | |
| R-335 | Peter Streng | Board member and representative on research and drug development | EAMDA European Alliance of neuro-Muscular Disorders Associations | MT | 14.02.2008 |
| R-351 | Dr Philippe Swennen | Project Manager | Association Internationale de la Mutualité | BE | 14.02.2008 |
| R-355 | Yannis Vardakastanis | President of EDF | The European Disability Forum | 14.02.2008 | |
| R-367 | Peter Bakker | behalf of the board, as delegated administrator of FESCA | European federation of scleroderma associations, named FESCA | 14.02.2008 | |
| R-388 | Flaminia Macchia Bangsgaard | Director for European Public Affairs | EURORDIS - European Organisation for Rare Diseases | FR | 14.02.2008 |
| R-430 | Lieven Bauwens | IF co-ordinator | International Federation For Spina Bifida & Hydrocephalus | BE | 26.02.2008 |
| R-439 | European Tarlov Cyst Alliance | BE | 17.02.2008 |
Member states (national authorities)
| Stakeholder | Function | Organisation | Country | Date | |
| R-082 | Stephen Mifsud | Health and Consumer Affairs Attaché | Permanent Representation of Malta to the European Union | MT | 01.02.2008 |
| R-218 | Lisbeth Myhre | Director, Rehabilitation and Rare Disorders Department | Norwegian Directorate for Health and Social Affairs | NO | 15.02.2008 |
| R-234 | Drs. H.R. Hurts | Director | Ministerie van Volksgesondheid, Welzijn en Sport | NL | 16.02.2008 |
| R-246 | Marie-Aline Bloch | Directeur scientifique | Caisse nationale de solidarité pour l’autonomie | FR | 13.02.2008 |
| R-279 | S. van Weely, Ph.D. | Scientific officer | Dutch Steering Committee on Orphan Drugs | NL | 13.02.2008 |
| R-316 | Jenny-Lee Spencer | Senior European Policy Manager | NHS European Office - UK National Health Service | UK | 14.02.2008 |
| R-325 | Malte Enderlein | Referent Europäische Gesundheitspolitik | Deutsche Sozialversicherung Europavertretung | DE | 14.02.2008 |
| R-354 | Dr. Sándor János PhD (response from the workshop) | Hungarian Ministry of Health | HU | 14.02.2008 | |
| R-356 | Zvezdana Veber-Hartman | Head, EU Affairs and International Cooperation Service | Ministrstvo za zdravje/Ministry of Health - Slovenia | SL | 14.02.2008 |
| R-373 + Annex |
Dr Michel Rosenheim | Conseiller technique | Pôle politiques de santé et prévention Cabinet de la Ministre de la Santé, de la Jeunesse & des Sports | FR | 14.02.2008 |
| R-419 | Prof. Dr. med. Ch. Fuchs i. A. Dr. med. F. Bäsler |
Bundesärztekammer Dezernat VI - Wissenschaft und Forschung | DE | 14.02.2008 | |
| R-421 | Isabel de la Mata | Health Counsellor | Spanish Permanent Representation to the EU | ES | 19.02.2008 |
| R-431 | Frank Niggemeier, Ph. D. | Head of Division "General Affairs of the EU, EU Coordination" | Federal Ministry for Health of Germany | DE | 27.02.2008 |
| R-432 | John Rowan | First Secretary (Health and Pharmaceuticals) | United Kingdom Permanent Representation to the European Union | UK | 27.02.2008 |
| R-440 | Jakob Axel Nielsen John Erik Pedersen |
Ministry Health Prevention | DK | 28.02.2008 | |
| R-461 | Helène Dahl Fransson | Social department- Swedish Ministry of Health and Social Affairs | SE | 10.03.2008 |
International and European organisations
| Stakeholder | Function | Organisation | Country | Date | |
| R-112 | Prof. K.Westermark Mrs B Holm Dr S Aymé |
(COMP Chairman) (COMP Vice-Chairman) (RDTF Chair) | EMEA / Committee for Orphan Medicinal Products (COMP) | FR | 07.02.2008 |
| R-154 | Standing Committee of European Doctors (CPME) | 11.02.2008 | |||
| R-195 | EuropaBio and EBE’s joint Taskforce on Orphan Medicinal Products | 12.02.2008 | |||
| R-225 | Frank Boeye | Chairman | "Study group Brain Tumours Belgium" | BE | 15.02.2008 |
| R-252 | Ivana Silva | Pharmaceutical & Professional Affairs | Pharmaceutical Group of the European Union (PGEU) Representing European Community Pharmacists | 13.02.2008 | |
| R-259 | Francois Decaillet | Senior adviser | WHO-Regional Office for Europe | 13.02.2008 | |
| R-366 | Chris Dawson | Liaison Officer ESIP | European Social Insurance Platform and the Medicine Evaluation Committee (MEDEV) of the European Social Health Insurance Forum | ||
| R-367 | Pascal Garel | Chief Executive | HOPE European Hospital and Healthcare Federation | 14.02.2008 | |
| R-375 | Tobias S. Hagedorn | Secretary of E.S.PKU | E.S.PKU (European Society for Phenylketonuria and Allied Disorders treated as Phenylketonuria) | DE | 14.02.2008 |
| R-394 | Kathy Pritchard-Jones | President, SIOP Europe | Société Internationale d’Oncologie Pédiatrique en Europe | 14.02.2008 | |
| R-396 | Ute Wallentin | OIFE President | Osteogenesis Imperfecta Federation Europe (OIFE) | 14.02.2008 | |
| R-404 | Nanca Cebron Lipovec | EPSA Public Health Working Committee Director | European Pharmaceutical Students' Association (EPSA) | 14.02.2008 | |
| R-406 | Jan-Inge Henter | International Conference of Rare Diseases and Orphan Drugs | SE | 14.02.2008 | |
| R-408 | Martina Cornel | Chair | Public and Professional Policy Committee of the European Society for Human Genetics | NL | 14.02.2008 |
| R-423 | Hildrun Sundseth | Head of EU Policy | European Cancer Patient Coalition | BE | 14.02.2008 |
| R-426 | Maria Brandao | Consultant to EASL | European Association for the Study of the Liver (EASL) | CH | 19.02.2008 |
| R-429 | Elisabeth Kasilingam | Assistant Policy Officer | European Patients' Forum | BE | 25.02.2008 |
Commercial organisations, companies and their associations
| Stakeholder | Function | Organisation | Country | Date | |
| R-040 | P. Dupuy, MD | President | Orfagen | FR | 15.01.2008 |
| R-179 | Eva Malong | Sekretariat Forschung, Entwicklung & Innovation/Biotechnologie | Verband forschender arzneimittelhersteller E.V. | DE | 12.02.2008 |
| R-180 | Leonardo Vingiani | Managing Director | Assobiotec - the Italian Association for Bioindustries | IT | 12.02.2008 |
| R-191 | Kevin Loth | Director, Professional Relations | Pharmion Ltd | UK | 12.02.2008 |
| R-194 | Dr. Karin Heidenreich | Senior Public Affairs Manager | Novartis European Public Affairs | >BE | 12.02.2008 |
| R-201 | Sebastian Johnson-Cadwell Wills Hughes-Wilson Katia Finck |
Associate Director Director Director, Public Affairs & Market Access |
BioMarin, Genzyme and Shire Human Genetic Therapies | > | 12.02.2008 |
| R-202 | Wills Hughes-Wilson | Director, Health Policy Europe | Genzyme | 12.02.2008 | |
| R-212 | Bundesverband Medizintechnologie e.V. - BVMed | DE | 15.02.2008 | ||
| R-214 | Dr. Kevin Loth | Director, Professional relation | Pharmion Ltd. | 15.02.2008 | |
| R-257 | Anna Ludwinek | Public Affairs Executive | Eucomed | BE | 13.02.2008 |
| R-263 | Vanessa Alfaro Ribeiro | Project coordinator | APBio - Associação Portuguesa de Bioindústrias | PT | 13.02.2008 |
| R-277 | Joseph Wildy | EU Public Affairs Manager | EuropaBio, the BIA European Biopharmaceutical Enterprises (EBE) | 13.02.2008 | |
| R-280 | Johan Prévot | Assistant Director, Public Affairs | PPTA Europe (Plasma Protein Therapeutics Association) | 13.02.2008 | |
| R-311 | Dr Richard Tiner | Medical Director | Association of the British Pharmaceutical Industry (ABPI) | UK | 13.02.2008 |
| R-330 | Jeanette Nenniger | F. Hoffmann-La Roche Ltd | CH | 14.02.2008 | |
| R-332 | Ashish Agarwal | Founder Director | ONCO Life Sciences (India) | IN | 14.02.2008 |
| R-350 | Françoise Rossi | Regulatory Strategy and Development Director | LFB Biotechnologies | FR | 14.02.2008 |
| R-360 | Toon Digneffe | Government Affairs & Public Policy Director, European Affairs | Baxter | BE | 14.02.2008 |
| R-362 | Clare Hellowell | Senior Administrative Assistant Government Affairs | Gilead Sciences | UK | 14.02.2008 |
| R-374 | Raquel Álvarez Fernández | Responsable de Soporte a Socios Secretaría General | ASEBIO - Spanish Associated of Bioenterprises | ES | 14.02.2008 |
| R-420 | Katia Finck | Director Public Affairs & Market Access Europe | Shire Human Genetic Therapies (SHGT) | ES | 18.02.2008 |
Universities and other experts
| Stakeholder | Function | Organisation | Country | Date | |
| R-012 | Assoc. Prof. Ludovit Kádasi, D.Sc. | President of SSMG | Dept. Molecular Biology, Comenius University | SK | 13.12.2007 |
| R-037 | dott. Pietro Cavalli, MD | Servizio di Genetica Azienda Istituti Ospitalieri | IT | 15.01.2007 | |
| R-045 | Prof. Milan Macek and Prof. Petr Goetz | Czech Society for Medical Genetics /University Hospital Motol and 2nd School of Medicine Charles University Prague | CZ | 18.01.2008 | |
| R-053 | Sabine Krause, MD, PhD | Labor für Molekulare Myologie Friedrich-Baur-Institut Neurologische Klinik und Poliklinik Ludwig-Maximilians-Universität | DE | 23.01.2008 | |
| R-065 | Mikael Rolfs | Socialdepartementet Sveriges regering Stockholm | SE | 07.01.2008 | |
| R-066 | Pr. F. Gottrand | Clinique de Pédiatrie, CHRU de Lille, Faculté de Médecine, Université de Lille2 | FR | 29.01.2008 | |
| R-070 | Prof. Bruno Dallapiccola | Coordinatore del progetto Orphanet-Italia | Genetista Medico - Istituto Mendel | IT | 30.01.2008 |
| R-075 | Pr Alain Verloes | Dept de Génétique, Hôpital R Debre | FR | 31.01.2008 | |
| R-090 | Flemish Hospital Pharmacists | BE | 14.12.2007 | ||
| R-099 | Pr Arnaud Basdevant | Pôle d’Endocrinologie-Diabétologie-Nutrition- Métabiolisme Hôpital de la pitié salpêtrière Paris | FR | 05.02.2008 | |
| R-136 | Luisa María Botella | Staff Researcher of CSIC | Spanish HHT unit | ES | 09.02.2008 |
| R-106 | Pr. Dian Donnai Dr. Emma Gillaspy, Dr Helen Middleton-Price, |
Director, Nowgen, and Professor of Medical Genetics Orphanet UK & Ireland, Nowgen Director, Nowgen |
University of Manchester | UK | 07.02.2008 |
| R-110 | Prof.dr. Cornelis Jakobs | Head Metabolic Unit | Dept Clinical Chemistry, PK 1X 014 VU University Medical Center Amsterdam | NL | 08.02.2008 |
| R-120 | Prof. dr. P.J.J. Sauer | Head pf Department | University Medical Center Groningen – Department of Pediatrics | 05.02.2008 | |
| R-128 | Dr. Stephen Lynn | TREAT-NMD Project Manager | Institute of Human Genetics Newcastle University | EN | 08.02.2008 |
| R-140 | Martina Cornel | Dutch Orphanet project leader | Orphanet | NL | 09.02.2008 |
| R-155 | Annie OLRY | Orphanet INSERM SC11 | FR | 11.02.2008 | |
| R-159 | Prof. Dr. med. Joerg Schmidtke | Direktor | Institut fuer Humangenetik Medizinische Hochschule Hannover | DE | 11.02.2008 |
| R-205 | Jolanta Sykut-Cegielska, MD, PhD, Ass. Prof. | Head of the Department of Metabolic Diseases, Endocrinology and Diabetology | Children’s Memorial Health Institute | PL | 12.02.2008 |
| R-221 | Prof. Dr. Cornelis Jakobs | Chairman of the SSIM | The society for the study of inborn errors of Metabolism – VU University Medical Center Amsterdam | NL | 15.02.2008 |
| R-230 | M.D. Darin Niklas PhD | Assistant Professor | The Qeen Silvia Children's hospital, Neurology, Psychiatry | SE | 15.02.2008 |
| R-231 | Prof Dr Jos van Roosmalen | Chairman of the national maternal mortality committee | Leiden University Medical Centre, department of Obstretics | NL | 15.02.2008 |
| R-254 | Prof Philip D Mayne MD, FRCPI, FRCPath | Director | National Newborn Screening Laboratory - Childrens University Hospital, Limited Liability Company (Limited by Shares), Dublin. | IE | 13.02.2008 |
| R-256 | Priv.-Doz. Dr. Maggie Walter | MD-NET Coordination and Information | German Muscular Dystrophy Network Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik |
DE | 13.02.2008 |
| R-260 | Dr Jennifer J Kurinczuk Dr Marian Knight |
Deputy Director NPEU, Clinical Director UKOSS (UK Obstetric Surveillance System) |
Submitted on behalf of the EurOSS initiative by: National Perinatal Epidemiology Unit, University of Oxford, | UK | 13.02.2008 |
| R-261 | G. Pfliegler MD | Division Rare Diseases 2nd Dept. Med. University of Debrecen | HU | 13.02.2008 | |
| R-273 | Riitta Salonen, MD, PhD | Head of the Department | Department of Medical Genetics Väestöliitto, Family Federation of Finland | FI | 13.02.2008 |
| R-274 | Prof Babill Stray-Pedersen | Professor I | University of Oslo, Faculty of Medicine Department of Obstetrics and Gynaecology, Rikshospitalet-Radiumhospitalet | NO | 12.03.2008 |
| R-282 | Prof. Dr. Paola Facchin MD PhD | Veneto Region Registry for Rare Diseases Epidemiology and Community Medicine Unit Paediatrics Department Padua University | IT | 13.02.2008 | |
| R-303 | Prof. Wanda Kawalec | Department of Cardiology Children's Memorial Health Institute | PL | 14.02.2008 | |
| R-304 | Sophie Duport, PhD | Research Governance Manager | The Royal Hospital for Neuro-disability | UK | 14.02.2008 |
| R-305 | Docteur Hubert JOURNEL | Généticien, pour le Groupe Folate France | FR | 14.02.2008 | |
| R-307 | Prof. Dr. P.P. De Deyn Prof. Dr. F. Eyskens Dr. R. Brouns Dr. K. De Boeck Prof. Dr. G. De Keulenaar |
ZNA Middelheim Queen Paola Child Hospital | BE | 14.02.2008 | |
| R-334 | John R. Ostergaard, M.D., DMSci. Allan Lund, M.D., DMSci |
Centre for Rare Diseases -, Department of Paediatrics Aarhus University Hospital, Skejby, Unit for Rare Diseases, Department of Clinical Genetics, University Hospital of Copenhagen |
DK | 14.02.2008 | |
| R-336 | Bengt Frode Kase Liv Tønnesen |
Head of Centre for Rare Disorders Senior Counsellor |
Rikshospitalet University Hospital | NO | 14.02.2008 |
| R-337 | Louise Taylor | Editor, OrphaNews Europe | The EC Rare Diseases Task Force Newsletter ORPHANET Hôpital Broussais INSERM SC11 |
FR | 14.02.2008 |
| R-339 | Helen Dolk | Professor of Epidemiology and Health Services Research EUROCAT Project Leader | University of Ulster | UK | 14.02.2008 |
| R-341 | Dr François LETERRIER | AFM, Institut de Myologie Hôpital Pitié-Salpêtrière | FR | 14.02.2008 | |
| R-343 | Group of Experts | Rarecare project | IT | 14.02.2008 | |
| R-345 | Pr Claude Griscelli | Fondation Imagine Institut des maladies génétiques | FR | 14.02.2008 | |
| R-346 | Prof. Johann Bauer, MD | Division of Molecular Dermatology and eb house austria Department of Dermatology Paracelsus Private Medical University Salzburg | DE | 14.02.2008 | |
| R-347 | Mr Simon Land | Consultations & Committee Services Manager | Professional Affairs Department Royal College of Physicians | UK | 14.02.2008 |
| R-361 | Dr. Florence Roufosse | Department of Internal Medicine, Erasme Hospital, Brussels, Belgium Institute for Medical Immunology, Gosselies, Belgium | BE | 14.02.2008 | |
| R-363 | Pascale Blaes | Director ESMO Brussels Office, Political Affairs, Director ESMO Foundation | European Society for Medical Oncology (ESMO) | BE | 14.02.2008 |
| R-365 | Dr. Giulio Panizza | Servizio Economia e Programmazione sanitaria | IT | 14.02.2008 | |
| R-370 | Communications and Public Affairs Team | Rehab Group | IE | 14.02.2008 | |
| R-384 | Jorge Sequeiros | President | Medical Genetics College, at the Portuguese Medical Association (Ordem dos Médicos) | PT | 14.02.2008 |
| R-389 | Ruth M. Lang Philip A. Routledge |
Liaison Manager Chairman, AWMSG, Professor of Clinical Pharmacology |
All Wales Medicines Strategy Group Welsh Medicines Partnership Cardiff University Department of Pharmacology, Therapeutics & Toxicology Wales College of Medicine |
||
| R-403 | Prof. B. Fowler, Ph.D. | Head of Labs | Metabolic Unit University Children's Hospital Basel (UKBB) |
CH | 14.02.2008 |
| R-405 | Prof. Ivo Kremensky, MD, PhD | Head | National Genetic Laboratory University Hospital of Obstetrics, Coordinator, Molecular Medicine Center, Medical University of Sofia |
BG | 14.02.2008 |
| R-407 | Günter Fasching, M.D. Prof. of Paediatric Surgery | Dept. of Paediatric Surgery, General Hospital Klagenfurt | AT | 14.02.2008 | |
| R-416 | Mojca Zerjav Tansek, MD | University Children's Hospital Department of Endocrinology, Diabetes and Metabolic Diseases |
SL | 17.02.2008 | |
| R-422 | Arbeitsgemeinschaft für angeborene Stoffwechselstörungen in der Inneren Medizin | DE | 19.02.2008 | ||
| R-428 | Professor Philip G. Murphy, M.Sc., M.D., F.R.C.Path., F.R.C.P.I. | Consultant in Medical Microbiology, Director of the CFAI Microbiology Reference Laboratory, | Adelaide Meath & National Children's Hospital | IE | 19.02.2008 |
| Stakeholder | Function | Organisation | Country | Date | |
| R-010 | Pr Isabelle Touitou, MD, PhD | Unité médicale des maladies auto-inflammatoires (Centre de référence) Laboratoire de génétique, Pôle de biologie-pathologie, Hôpital Arnaud de Villeneuve |
FR | 06.02.2007 | |
| R-096 | Professeur Jean-François CORDIER | Service de Pneumologie – Centre de référence des maladies orphelines pulmonaires | FR | 05.02.2007 | |
| R-156 | Professeur Eric HACHULLA | Coordonnateur | Centre de Référence des Maladies Auto-immunes et Maladies Systémiques Rares "Sclérodermie Systémique" | FR | 11.02.2007 |
| R-160 | Dr Isabelle Thuret Dr Catherine Badens |
Coordonnatrice | Centre Maladies Rares Thalassémie | FR | 11.02.2007 |
| R-171 | Mrs. Marieta Igarenska, MPsych | Project Coordinator Information | Centre for Rare Diseases and Orphan Drugs Bulgarian Association for Promotion of Education and Science | BG | 11.02.2007 |
| R-187 | Miros?aw Zieli?ski | Przewodnicz?cy | Krajowe Forum na rzecz terapii chorób rzadkich ORPHAN |
PL | 12.02.2007 |
| R-324 | Annette Sänger | Cand.Comm | Center for Rare Diseases and Disabilities | DK | 14.02.2007 |
| R-353 | Elaine Lammas | Research and Policy Advisor | Irish Platform for Patients' Organisations, Science and Industry | IE | 14.02.2007 |
| R-379 | Sylvie Odent | Coordonnateur du centre de référence "maladies rares" anomalies du développement et syndromes malformatifs" de l'Ouest | Génétique Médicale Hôpital SUD | FR | 14.02.2007 |
| R-381 | Pr S. Sarnacki, Pr P.A. Lehur, coordonnateurs Dr Célia Crétolle, PH |
Centre de référence Malformations ano-rectales et pelviennes rares Chirurgie viscérale infantile et INSERM U781 Hôpital Necker-Enfants Malades | FR | 14.02.2007 | |
| R-383 | Paola Vizziello, Paola Ajmone, Francesca Dall'Ara, Claudia Rigamonti | Children complex disabilities and rare diseases Centre Child and adolescent neuropsychiatric Unit Fondazione Ospedale Maggiore Policlinico, Mangiagalli and Regina Elena | IT | 14.02.2007 | |
| R-402 | Dr. F. Eyskens | Department of Metabolic Diseases, CEMA-Antwerp | BE | 14.02.2007 | |
| R-424 | Pr. Henri Plauchu et Dr. Sophie Dupuis-Girod | Centre de Référence "Maladie de Rendu-Osler" | FR | 19.02.2007 | |
| R-427 | Dott.ssa Daniela Settesoldi | Agenzia Italiana del Farmaco – AIFA Italian Medicines Agency | IT | 19.02.2007 | |
| R-434 | Pr. Christian HAMEL, M. Jerez Laurent | Le coordonnateur Administatif | CHU – Centre Hospitalier Universitaire | FR | 17.02.2007 |
| Stakeholder | Function | Organisation | Country | Date | |
| R-023 | Rosario Perona | Associate Professor | Instituto de Investigaciones Biomédicas CSIC/UAM Translational Oncology Unit CSIC/H. La Paz | ES | 27.12.2007 |
| R-264 | Dr. Pauline Evers | Project Manager Treat-NMD | European Neuromuscular Centre | 13.02.2008 | |
| R-278 | Silvio Garattini | The Clinical Research Center for Rare Diseases (CRCRD) Aldo e Cele Daccò | IT | 13.02.2008 | |
| R-291 | Prof. Martina Cornel | Chair | Public and Professional Policy Committee of the European Society for Human Genetics | NL | 13.02.2008 |
| R-310 | Dr T.Kyriakides MB, ChB,Bsc(Hons) | Senior Consultant Neurologist Director | Neuropathology Lab Cyprus Institute of Neurology and Genetic |
CY | 14.02.2008 |
| R-364 | Dr. Anne-Marie Masquelier | Chief Executive Officer | Genethon | FR | 14.02.2008 |
| Stakeholder | Function | Organisation | Country | Date | |
| R-006 | Gianni Capezzuoli | IT | 01.12.2007 | ||
| R-007 | Giovanna Danieli | IT | 03.12.2007 | ||
| R-009 | Carmen Navas | ES | 13.12.2007 | ||
| R-013 | Mihaela Andonesei | RO | 13.12.2007 | ||
| R-018 | Mélodie Chevalier | FR | 19.12.2007 | ||
| R-019 | Robert Veres | 23.12.2007 | |||
| R-020 | Lupas Delia | 23.12.2007 | |||
| R-028 | Florence Giroud | 03.01.2008 | |||
| R-035 | International Labour office - Genève | CH | 07.01.2008 | ||
| R-047 | Jean-Raphaël Miron | FR | 19.01.2008 | ||
| R-050 | D. Malon | FR | 22.01.2008 | ||
| R-054 | Docteur Dany Galliano | Génétique Médicale | FR | 23.01.2008 | |
| R-056 | Dr. J. Fabre | FR | 24.01.2008 | ||
| R-058 | Bernard Gubarewicz | PL | 26.01.2008 | ||
| R-063 | Marek Kramarski | PL | 28.01.2008 | ||
| R-064 | Nuchanard Chiannilkulchai PH. D. | FR | 28.01.2008 | ||
| R-067 | Serge Trevidic | FR | 29.01.2008 | ||
| R-076 | Christiane et Jean Mallet | FR | 31.01.2008 | ||
| R-078 | France Caelen | FR | 31.01.2008 | ||
| R-079 | Anne et Eric Martin | FR | 31.01.2008 | ||
| R-084 | Jean Claude | FR | 02.02.2008 | ||
| R-086 | Brigitte Seuser | CH | 04.02.2008 | ||
| R-095 | Brigitte Schustermann | FR | 05.02.2008 | ||
| R-102 | Natalia Strzyzewska | PL | 06.02.2008 | ||
| R-104 | Dr Pascale Sarni-Manchado | CR1 INRA | FR | 06.02.2008 | |
| R-117 | Gilles Archambault | FR | 05.02.2008 | ||
| R-121 | Jeanne Herrscher | FR | 28.01.2008 | ||
| R-126 | FR | 01.02.2008 | |||
| R-131 | Paulette Morin | FR | 08.02.2008 | ||
| R-181 | Win Bayano | FR | 12.02.2008 | ||
| R-198 | Edyta Krolik | PL | 12.02.2008 | ||
| R-203 | Nathalie Heral | FR | 12.02.2008 | ||
| R-216 | Marie-Helene Weinachter | FR | 15.02.2008 | ||
| R-224 | FR | 15.02.2008 | |||
| R-239 | Colette Girardot | 12.02.2008 | |||
| R-253 | PL | 13.02.2008 | |||
| R-266 | PL | 13.02.2008 | |||
| R-284 | Inês Leal de Faria | PT | 13.02.2008 | ||
| R-288 | Genoveva Lopez Garcia | 13.02.2008 | |||
| R-306 | Doris Filippin-Monnet | CH | 14.02.2008 | ||
| R-309 | Sabine Viand | CH | 14.02.2008 | ||
| R-331 | Sylvie Fay | FR | 14.02.2008 | ||
| R-349 | Dorota i Robert ?abczak | PL | 14.02.2008 | ||
| R-368 | Freddy Pepelnjak | FR | 14.02.2008 | ||
| R-372 | Docteur Philippe Henry | La Prothèse Générale | FR | 14.02.2008 | |
| R-376 | Vesa Nopanen | 14.02.2008 | |||
| R-378 | Pavel Dessy | BG | 14.02.2008 | ||
| R-385 | Arja Nurmela ja Virpi Tanskanen | 14.02.2008 | |||
| R-409 | Catherine Mollard | FR | 14.02.2008 | ||
| R-438 | FR | 14.02.2008 | |||
| R-453 | Maria Irena Sterna | PL | 14.02.2008 | ||
| R-454 | Kazimierz Owczarek | PL | 14.02.2008 | ||
| R-455 | Jadwiga Socha | PL | 14.02.2008 | ||
| R-456 | Tomasz Bobrowski | PL | 14.02.2008 | ||
| R-457 | Andrzej Strzy?ewski | PL | 14.02.2008 | ||
| R-458 | Beata Ko?li?ska | PL | 14.02.2008 |