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II International Meeting on Rare Respiratory Diseases Rare Diseases as Models for Highly Prevalent Diseases 12-14 2018 December Valencia (Spain) th ENDORSMENTS AND RECOGNITIONS OF SCIENTIFIC ACTIVITY SPONSORSHIPS PATIENT ASSOCIATIONS Plenary sessions: Salón de Actos INCLIVA. Avenida Menéndez Pelayo, 4 46010 Valencia Workshops: Seminarios Facultad de Medicina de la Universitat de València. Avda. Blasco Ibáñez nº 15 - 46010 - Valencia Single mode: € 50 Deadline for registration until 11 December 2018 e-Registration via the following link: https://www.fundanet.incliva.es/NuevoCursosCongresos * Registration includes attendance certificate, work lunches and coffees during recesses. PLACE REGISTRATION RIGHTS Instituto de Investigación Sanitaria INCLIVA Teléfono: 96 1973517 Página WEB: http://www.incliva.es/formacion-incliva TECHNICAL SECRETARY DIRECTION Dr. Francisco Dasí Fernández Investigador INCLIVA-Prof. asociado UVEG Dra. Amparo Escribano Montaner Pediatra HCUV. Profª Titular UVEG ORGANISING COMMITTEE Dra. Estrella Fernández Fabrellas Neumóloga CHGU - Profª asociada UVEG Dra. Silvia Castillo Corullón Pediatra HCUV Dr. Miguel Armengot Carceller Otorrino HUP La Fe - Prof UVEG Dr. Francisco Sanz Herrero Neumólogo CHGU Dña. Mercedes Navarro García Periodista SCIENTIFIC COMMITTEE Dr. Francisco Dasí Fernández IIS INCLIVA/ Universitat de València (UVEG) Dra. Amparo Escribano Montaner Pediatra HCUV. Profª Titular UVEG Dr. Silvia Castillo Corullón IIS INCLIVA/ UVEG Dr. Estrella Fernández Fabrellas Hospital General Valencia/UVEG Dr. Miguel Armengot Carceller Hospital La Fe Valencia/ UVEG Dr. Salvador Aliño Pellicer UVEG Dr. Jane Lucas. University of Southampton (UK) Dr. Hannah Mitchison. UCL (UK) Dr. Gonny Gutierrez. Alpha-1 foundation (USA) AORG2018/115

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Page 1: ENDORSMENTS AND RECOGNITIONS Plenary sessions: OF ... · Alpha-1 global Gonny Gutierrez Alpha 1 Global Boston (USA) Time Activity Speaker Institution THURSDAY 13/ 12/ 2018 CYSTIC

II International Meeting on Rare Respiratory

DiseasesRare Diseases as Models for

Highly Prevalent Diseases

12-142018

DecemberValencia (Spain)

th

ENDORSMENTS AND RECOGNITIONS OF SCIENTIFIC ACTIVITY

SPONSORSHIPS

PATIENT ASSOCIATIONS

Plenary sessions: Salón de Actos INCLIVA.Avenida Menéndez Pelayo, 446010 Valencia

Workshops: Seminarios Facultad de Medicina de la Universitat de València. Avda. Blasco Ibáñez nº 15 - 46010 - Valencia

Single mode: € 50Deadline for registration until 11 December 2018 e-Registration via the following link:https://www.fundanet.incliva.es/NuevoCursosCongresos

* Registration includes attendance certificate,work lunches and coffees during recesses.

PLACE

REGISTRATION RIGHTS

Instituto de Investigación Sanitaria INCLIVATeléfono: 96 1973517Página WEB: http://www.incliva.es/formacion-incliva

TECHNICAL SECRETARY

DIRECTIONDr. Francisco Dasí FernándezInvestigador INCLIVA-Prof. asociado UVEG

Dra. Amparo Escribano MontanerPediatra HCUV. Profª Titular UVEG

ORGANISINGCOMMITTEE

Dra. Estrella Fernández FabrellasNeumóloga CHGU - Profª asociada UVEGDra. Silvia Castillo CorullónPediatra HCUVDr. Miguel Armengot CarcellerOtorrino HUP La Fe - Prof UVEGDr. Francisco Sanz HerreroNeumólogo CHGUDña. Mercedes Navarro GarcíaPeriodista

SCIENTIFICCOMMITTEEDr. Francisco Dasí FernándezIIS INCLIVA/ Universitat de València (UVEG)

Dra. Amparo Escribano MontanerPediatra HCUV. Profª Titular UVEGDr. Silvia Castillo CorullónIIS INCLIVA/ UVEGDr. Estrella Fernández FabrellasHospital General Valencia/UVEGDr. Miguel Armengot CarcellerHospital La Fe Valencia/ UVEGDr. Salvador Aliño PellicerUVEGDr. Jane Lucas.University of Southampton (UK)Dr. Hannah Mitchison.UCL (UK)Dr. Gonny Gutierrez.Alpha-1 foundation (USA)

AORG2018/115

Page 2: ENDORSMENTS AND RECOGNITIONS Plenary sessions: OF ... · Alpha-1 global Gonny Gutierrez Alpha 1 Global Boston (USA) Time Activity Speaker Institution THURSDAY 13/ 12/ 2018 CYSTIC

Time Activity Speaker Institution

WEDNESDAY 12/ 12/ 2018

15:00 - 15:30

REGISTRATION

15:30 - 16:00

OPENING CEREMONY

PLENARY SESSION: RARE RESPIRATORY DISEASESChair: Francisco Dasí

16:00 - 16:30

Rare diseases: Challenges and

opportunitiesFrancisco Dasí

IIS INCLIVA. Universitat de València

Valencia (Spain)

16:30 - 17:00

Rare Respiratory Diseases in Spain. The

SEPAR perspective

Jaime Signes-Costa

Hospital Clínico Universitario de Valencia

Miembro Junta SEPARValencia (Spain)

17:00 - 17:30

COFFEE BREAK

17:30 - 18:00

Quality of life for caregivers and patients with Rare Respiratory

Diseases

Selene Valero Universitat de València Valencia (Spain)

18:00 - 18:15

Rare Respiratory Diseases in the Mass

MediaMercedes Navarro Valencia (Spain)

IIS INCLIVA

18:15 - 18:35

It is patient’s time: FEDER

David SánchezVocal Junta Directicva FEDER.

Presidente RETIMURMurcia (Spain)

18:35 - 19:00

It is patient’s time: Alpha-1 global

Gonny Gutierrez Alpha 1 Global Boston (USA)

Time Activity Speaker Institution

THURSDAY 13/ 12/ 2018

CYSTIC FIBROSIS Chair: Silvia Castillo Corullón

9:00 - 9:30

Importance of airway treatment in CF and

other treatment optionsHeribert Mentzel PARI Pharma

Germany

9:30 - 10:00

Mutations-guided therapy in CF

Silvia Gartner Hospital Vall d´Hebrón Barcelona (Spain)

10:00 - 10:30

Other co-morbidities: systemic CF

Amparo Solé Hospital La Fe de Valencia Valencia (Spain)

10:30 - 11:00

DISCUSSION

11:00 - 11:30

COFFEE BREAK

IDIOPATHIC PULMONARY FIBROSISChair: Estrella Fernández Fabrellas

11:30 - 12:00

Lung and agingAna Montes

Worboys

Institut d’Investigació Biomèdica de Bellvitge (IDIBELL)

Barcelona (Spain)

12:00 - 12:30

New diagnostic guides in IPF

José Antonio Rodríguez Portal

Hospital Universitario Virgen del Rocío

Sevilla (Spain)

12:30 - 13:00

Personalized medicine in IPF

Raquel García Sevilla

Hospital General de Alicante Alicante (Spain)

13:00 - 13:30

DISCUSSION

13:30 - 14:30

LUNCH

15:30 - 18:30

WORKSHOPS (45min. each)

- Chlorides in sweat (Castillo)Hospital Clínico Universitario

de ValenciaValencia (Spain)

- Nebulized Therapy (Mentzel) PARI PharmaGermany

- Respiratory physiotherapy (Yuste)Hospital Clínico Universitario

de ValenciaValencia (Spain)

- Gene Therapy in Rare Respiratory Diseases (Dasí/ Pellicer/ Bañuls)

IIS INCLIVA. Universitat de València

Valencia (Spain)

Time Activity Speaker Institution

FRIDAY 14/ 12/ 2018

COPD and ALPHA-1 ANTITRYPSIN DEFICIENCY Chair: Francisco Dasí Fernández

9:00 - 9:30

COPD associated to AATD: similarities & differences with the

usual COPD

Ana Filipa CostaCentro Hospitalario e Universiário

de Coimbra (CHUC-HG) Coimbra (Portugal)

9:20 - 9:40

Molecular diagnosis of AATD

Ilaria Ferrarotti IRCCS San Matteo Hospital Foundation Pavia (Italy)

9:40 - 10:00

AATD in adults: substitutive and

bronchodilator therapyFrancisco Sanz

Hospital General Universitario de Valencia

Valencia (Spain)

10:00 - 10:30

Liver disease in AATD Mónica Pons Vall d´Hebron Research Institute Barcelona (Spain)

10:30 - 11:00

DISCUSSION

11:00 - 11:30

COFFEE BREAK

PRIMARY CILIARY DYSKINESIA AND CYLIOPATHIESChair: Miguel Armengot Carceller

11:30 - 12:00

Cochlear implants in Usher Syndrome

Laura Cavallé Hospital La Fe de Valencia Valencia (Spain)

12:00 - 12:20

Clinical manifestations in adults and children. Lung, sinus and ear

disease. Evolution and prognosis

Miguel Armengot/Antonio Moreno

Hospital La Fe de Valencia. Universitat de València Valencia (Spain)/ Hospital Vall d´Hebrón

Barcelona (Spain)

12:20 - 12:40

Diagnostic problems in PCD

Jane Lucas University of SouthamptonSouthampton (UK)

12:40 - 13:00

Emerging genetics of PCD

Hannah Mitchison University College London London (UK)

13:00 - 13:30

DISCUSSION

13:30 - 14:30

LUNCH

15:30 - 18:30

WORKSHOPS (45min. each)

- Electronic microscopy (Carda/ Mata)Hospital Clínico

Universitario de ValenciaValencia (Spain)

- High Speed Video: Ciliary motility (Armengot /Castillo/ Pellicer)

Hospital La Fe de Valencia. Universitat de València/ Hospital Clínico Universitario de Valencia/

IIS INCLIVA. Universitat de València

Valencia (Spain)

- Spirometry: interpretation (Torres/ Herrejón)

Complejo Hospitalario de Vigo/ Hospital Dr. Peset (Valencia)

- Image in COPD (Sanz)Hospital General

Universitario de ValenciaValencia (Spain)

18:30 - 19:00

CLOSING CEREMONY AND AWARDING OF PRIZES FOR BEST POSTERS AND CLINICAL CASES

II International Meeting on Rare Respiratory DiseasesDue to its international character, the congress will be bilingual (Spanish/English), being the choice of the language at the discretion of the speakers.