14º International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease)

Organiza: Programa de las Lipofuscinosis Ceroideas Neuronales del Centro de Estudio de las Metabolopatias Congénitas (NCLCEMECO).

Sede: Hotel Sheraton de Córdoba. Av. Duarte Quirós 1300, Córdoba

Auspicia:
- CONICET
- Universidad Nacional de Córdoba
- Beyond Batten Disease-Foundation
- BARN
- Córdoba Argentina
- BATTEN DISEASE
- BIOMARIN

Directores: Inés Noher de Halac Chairman  NCL2014, Córdoba-Argentina

Coordinadores:
Romina Kohan-Executive Secretary
Inés Adriana Cismondi- Secretary

Disertantes:
•    Segolène AYMÈ, Orphanet, Paris, France: Plenary lecture 1 “European policy in the field of rare diseases to improve patient care and boost research”; Plenary lecture 2 “Common terminologies and nomenclatures for registrating rare diseases data: state of current international initiatives”. 
•    Heather ADAMS, University of Rochester,Rochester, USA: Behavioural and Cognitive Issues in JNCL: What are the symptoms, how do we measure them, and how do we manage them?
•    Jonathan COOPER, King's College London,London, UK: Glial contribution to NCL pathogenesis.
•    Susan COTMAN, Harvard Medical School,Boston, USA: Cell biology of the NCLs.
•    Dolores CRESPO, Hospital de Niños, Province of Córdoba, Argentina: Experience in the management of the artificial nutrition in childhood neurodegenerative diseases in Latin America
•    Ron CRYSTAL, Weill Cornell Medical College -NY, USA: Genetic therapies and personalized medicine. Recombinant virus as a vehicle for in vivo gene therapy. Human trials of gene therapy (pending confirmation).
•    Beverly DAVIDSON, University of Iowa, USA: Membrane perturbation and small molecule drug intervention for JNCL. Experimental Therapies.
•    Glyn DAWSON, University of Chicago,Chicago, USA: Negatively charged quantum dots deliver tripeptidyl peptidase-1 to neurons: in a model of CLN2 Batten disease.
•    Raquel DODELSON de KREMER, CEMECO, Hospital de Niños, Universidad Nacional de Córdoba, Córdoba, Argentina.
•    Alessandro FRALDI, Naples, Italy: Coupled gene/ER therapy for MPSIIIA correcting behavior and storage material in the brain of affected mice (pending confirmation).
•    Joseph GLYKYS, Massachusetts General Hospital and Harvard Medical School, Boston, USA: Epilepsy in NCL, thoughts on pathophysiology.

•    Hans Hilmar GOEBEL, Berlin, Germany: Introduction to “What is a NCL?” Biobank/ Tissue donation.
•    Norberto GUELBERT, Universidad Nacional de Córdoba, Córdoba, Argentina: The NCL program in Latin America.
•    Katherine A. HIGH, Howard Hughes Medical Institute, William H. Bennett Professor of Pediatrics,Perelman School of Medicine at the University of Pennsylvania, Center for Cellular and Molecular Therapeuticsat The Children's Hospital of Philadelphia, Philadelphia, USA.
•    Sara E. MOLE, University of London, United Kingdom: Genetics of the NCLs.
•    Nardo NARDOCCI, Milan, Italy: Movement Disorders in Childhood NCL (pending confirmation).
•    Charles O’NEIL, BioMarin Pharmaceuticals:  Human and Canine studies on ERT for LINCL.
•    David PALMER, University Lincoln, Australia: BARN the international collaboration set up to coordinate studies of animal models of Batten disease. Facts and fallacies about storage, neuroinflammation and pathogenesis in the NCLs.
•    David A. PEARCE, Sanford School of Medicine, Sioux Falls, USA: New animal models for the study of Batten disease.
•    Victor PENCHASZADEH, Cornel University, USA: Bioethics and genetical diseases.
•    Frances PLATT, University of Oxford,London, UK: Niemann Pick type C disease, unexpected links to rare and common diseases.
•    Gabriel RABINOVICH, Institute of Biology and Experimental Medicine
CONICET,Buenos Aires, Argentina:  Regulatory circuits mediated by lectins and glycans linking immune and neural systems.
•    Carolina RIGA, Hospital de Niños, Province of Córdoba, Argentina: Experience in the management of the artificial nutrition in childhood neurodegenerative diseases in Latin America.
•    Angela SCHULZ, University Medical Center Hamburg,Hamburg, Germany: Anticonvulsive therapy in NCL.
•    Alessandro SIMONATI, Verona University Medical School,Verona, Italy: The clinical spectrum of adult NCL. Biobank/ Tissue donation.
•    Katherine SIMS, Massachusetts General Hospital, Boston, USA:  Clinical care. Clinical translational research [usefulness, mechanisms etc. of database/biorepository]
•    José TORRES, Hospital Privado, Córdoba, Argentina: Bioethical Issuesin Artificial Nutrition of Children with Neurodegenerative Disease.
•    Jaana TYYNELÄ VESTERINEN, University of Helsinki,Finnish Medicines Agency, Finland.  
•    Ruth WILLIAMS, Evelina Childrens Hospital, London, United Kingdom: The clinical spectrum of childhood NCL.

Informes e Inscripción

Contactos:  Ines Noher de Halac
Hospital de Niños
Ferroviarios 1250
Córdoba (CP 5014)
Argentina
Tel. +54 351 457-5974
Email: nclcongress2014@gmail.com
www.nclcordoba.com