Table 2 Members of the working groups that participated in the FINEERR Project
WG-1 | WG-2 | WG-3 | WG-4 |
|---|---|---|---|
Aitor Aparicio. Managing Director of the State Reference Center for Rare Diseases (Centro de Referencia Estatal de Enfermedades Raras—CREER) under the IMSERSO. Burgos Antonia Campolongo. Nurse, Movement Disorders Unit, Neurology Service, Sant Pau Hospital. Barcelona Emili Esteve. Director of the Technical Department of Farmaindustria Atanasio García. General Director of Benefits and Pharmacy. Department of Health and Consumption. Government of the Balearic Islands Pablo Lapunzina. Head of the INGEMM-IdiPAZ Research Group. La Paz University Hospital. Madrid Álvaro Lavandeira. President of the Institute for Health Research and Training. Advisor in Pharmaceutical Law at the Madrid Bar Association (Ilustre Colegio de Abogados de Madrid—ICAM) Alfonso Macaya. Head of Pediatric Neurology at Vall d'Hebron University Hospital. Barcelona José María Millán. Researcher at the Health Research Institute La Fe (Instituto de Investigación Sanitaria—IIS La Fe). Valencia Manuel Posadaa. Director of the Research Institute of Rare Diseases of the Carlos III Health Institute (Instituto de Salud Carlos III—ISCIII). OPIS Research Professor in Rare Diseases Ignacio Málaga Diéguez. Outgoing President of the Spanish Society of Pediatric Neurology (Sociedad Española de Neurología Pediátrica—SENEP). Head of the Neuropediatrics Unit at the Asturias Central University Hospital. Member of the CORE Advisory Committee of the FINEERR project | Reyes Abad. Head of Pharmacy of the Miguel Servet University Hospital. Zaragoza Jorge Camarero. Vice President of PAREXEL Consulting. Former scientific evaluator of the Spanish Agency of Medicines and Medical Devices (Agencia Española de Medicamentos y Productos Sanitarios—AEMPS) Francisco Dolz. Manager of Dr Peset University Hospital. Valencia Víctor Jiménez. Head ofthe Hematology and Hemotherapy Service, La Paz University Hospital. Madrid Mencía de Lemus. President of the Spinal Muscular Atrophy Foundation (Fundación Atrofia Muscular Espinal- FundAME) Isabel Martín. Head of the Pharmacy Service of the University Hospital Complex. A Coruña Jorge Matías-Guiu. Director of the Institute of Neurosciences. Head of the Neurology Service of the San Carlos Clinical Hospital. Madrid Jorge Mestre. Independent economic consultant. Associate Professor at Carlos III University. Madrid Irene Beatriz Zschaeck. Neuropsychologist at Sant Joan de Déu Hospital. Barcelona Marta Trapero Bertran. Professor and researcher at the Catalonia International University (Universitat Internacional de Catalunya – UIC). Barcelona. Member of the CORE Advisory Committee of the FINEERR project | José Javier Castrodeza Sanz. Professor of Preventive Medicine and Public Health at the University of Valladolid Carlos García Collado. Deputy Director General of Pharmacy and Services in the Andalusian Health Service Pedro Gómez Pajuelo. Former Secretary General of the ONT and former Deputy Director General of Pharmacy Caridad Pontes García. Medicines Manager of the Catalan Health Service Santiago de la Riva. Vice-president of the Spanish Federation of Rare Diseases (Federación Española de Enfermedades Raras—FEDER) Pedro Luis Sánchez García. Director of the Research Department of Farmaindustria Luis Verde Remeseiro. Manager of the Integrated Health Area of A Coruña SERGAS. Academic Director of the Master’s Degree in Healthcare and Hospital Management at IFFE Business School Olga Delgado Sánchez. President of the Spanish Society of Hospital Pharmacy (Sociedad Española de Farmacia Hospitalaria—SEFH). Head of the Pharmacy Service of Son Espases University Hospital. Palma de Mallorca. Member of the CORE Advisory Committee of the FINEERR project | Soledad Cabezón Ruiz. Former Member of the European Parliment on behalf of the Spanish Socialist Workers’ Party (Partido Socialista Obrero Español – PSOE). Cardiologist José Martínez Olmos. Professor at the Andalusian School of Public Health (Escuela Andaluza de Salud Pública—EASP) Antoni Montserrat Moliner. Member of the Board of Directors of ALAN—MALADIES RARES LUXEMBOURG Rubén Moreno Palanques. Senator on behalf of the Popular Party (Partido Popular—PP). Member of the Health and Consumption Commission Ana Pastor Julián. Member of the Spanish Parliament on behalf of the Popular Party (Partido Popular—PP). Member of the Health and Consumption Commission. Second Vice-President of the Congress of Deputies Ana Prieto Nieto. Member of the Spanish Parliament on behalf of the Spanish Socialist Workers' Party (Partido Socialista Obrero Español—PSOE). Spokesperson in the Health and Consumption Commission. First Secretary of the Interior Commission Julio Sánchez Fierro. Lawyer and Health Sciences PhD Juan Luis Steegmann. Member of the Spanish Parliament on behalf of VOX. Spokesperson in the Health and Consumption Commission Alba Ancochea Díaz. Outgoing Director of the Spanish Federation of Rare Diseases (Federación Española de Enfermedades Raras—FEDER). Member of the International Rare Disease Research Consortium. Member of the CORE Advisory Committee of the FINEERR project Ignacio Málaga Diéguez. Outgoing President of the Spanish Society of Pediatric Neurology (Sociedad Española de Neurología Pediátrica—SENEP). Head of the Neuropediatrics Unit at the Asturias Central University Hospital. Member of the CORE Advisory Committee of the FINEERR project |