Past Events 2013
Seattle, December 6, 2013, at the University of Washington
Susan Hayflick (OHSU), Talk on "Neurodegeneration with Brain Iron Accumulation: New Genes and Emerging Therapeutics" at the University of Washington, Department of Medicine, Div Genetics
Seattle, December 5, 2013, at the University of Washington
Susan Hayflick, Penny Hogarth (OHSU), Talk on "NBIA: genes to pathways to therapeutics" at the University of Washington, Department of Neurology
Barcelona, October 17, 2013, at the 23rd European Drosophila Research Conference
Ody Sibon (UMCG), Talk on "Drosophila as a tool to identify treatment options for neurodegeneration with brain iron accumulation" at the 23rd European Drosophila Research Conference
Poznan, Poland, October 11-12, 2013, at the IV Forum Neurologii Dziecieceij
Tomasz Kmiec (CMHI), Talk on "Deep Brain Stimulation in treatment symptomatic generalized dystonia in PKAN patients" at the IV Forum Neurologii Dziecieceij (IV Forum Neuropaediatrics)
North Bethesda, USA, October 7-9, 2013, at the 3rd Annual U.S. Conference on Rare Diseases and Orphan products
Kristen Giambusso, Nancy Sweeters (CHRCO), Poster presentation on "Journey of a Rare Disease: From Compassionate Use to Phase III Trial of Neurodegenerative Brain Iron Accumulation (NBIA)" at the 3rd Annual U.S. Conference on Rare Diseases and Orphan products
Hinxton, Cambridge, October 2-4, 2013, at the conference "Mitochondrial Disease: Translating biology into new treatments"
Valeria Tiranti (FINCB), Talk on "Are mitochondrial dysfunctions key mediators in the pathogenesis of NBIA?" at the conference "Mitochondrial Disease: Translating biology into new treatments", organized by the Wellcome Trust
Vienna, September 26-27, 2013, at the Meeting on Neuroacanthocytosis Syndromes (EMINA)
Thomas Klopstock (LMU), Ody Sibon (UMCG), Presentations at the "Meeting on Neuroacanthocytosis Syndromes (EMINA)"
Milan, September 26-27, 2013, at the course "Novità in Neurologia per l'Infanzia: dalla Ricerca alla Clinica"
Valeria Tiranti (FINCB), Talk on "Defect of Coenzyme A in NBIA" within the course "Novità in Neurologia per l'Infanzia: dalla Ricerca alla Clinica" at the Aula Magna dell'Università degli Studi, organized by the Mariani Foundation
Brussels, September 27, 2013, at 10th European Paediatric Neurology Society Congress (EPNS)
Susan Hayflick (OHSU), Presentation on "An update on NBIA disorders and their treatment" at the 10th European Paediatric Neurology Society Congress (EPNS)
Dresden, September 21, 2013, at 86th Annual Congress of the German Neurological Society (DGN)
Tobias Haack (TUM), Talk on "WDR45 de novo mutations cause a clinically distinct, x-linked form of NBIA" at the 86th Annual Congress of the German Neurological Society (DGN)
Essen, Germany, September 18, 2013, at Opening Ceremony of EZSE
Hoffnungsbaum e.V., Information booth at the opening ceremony of the EZSE, the centre for Rare Diseases in Essen
Barcelona, September 3, 2013, at 12th International Congress of Inborn Errors of Metabolism (ICIEM)
Susan Hayflick (OHSU), Talk on "NBIA and related disorders: Therapeutics" in the context of the session "Movement disorders and inborn errors of metabolism" at the ICIEM 2013
Oakland, USA, July 6, 2013, at Grand Rounds at the CHRCO
Elliott Vichinsky, Christine Aguilar (CHRCO), Organization of Grand Rounds on clinical trial and PKAN at the Children's Hospital and Research Center Oakland
Spala, Poland, June 28-30, 2013, at XI European Conference on Rare Diseases: "Rare diseases - upcoming challenges"
Tomasz Kmiec (CMHI), Talk on "TIRCON - An EU-funded rare disease project dedicated to NBIA" at the XI European Conference on Rare Diseases
Aschaffenburg, Germany, June 14-15, 2013, at Annual Meeting of Kindernetzwerk e.V.
Angelika Klucken (HoBa), Talk on "Cooperation is the magic word - From isolation to international collaboration" at the Annual Meeting of Kindernetzwerk e.V.
Cambrigde, May 15, 2013, at MBU of MRC
Valeria Tiranti (FINCB), Talk on "Pantothenate kinase-associated neurodegeneration: investigations of a PANK2 KO mouse model and development of new neuronal cellular systems" at the Mitochondrial Biology Unit of the Medical Research Council in Cambridge
Napa, California, USA, May 13, 2013, at School of Nursing of Pacific Union College
Nancy Sweeters (CHRCO), Lecture about TIRCON to approximately 40 nursing students at the School of Nursing of Pacific Union College in Napa, California
Innsbruck, April 26, 2013, at GNP Congress, NBIA Symposium
LMU, TUM, HoBa, NBIA teaching workshop for neuropediatricians from German-speaking countries at the annual GNP Congress
San Antonio, Texas (USA), April 4-7, 2013, at Seventh International NBIA Disorders Association Family Conference
NBIADA, Organization of the 7th International NBIA Disorders Association Family Conference bringing together patient families, researchers and clinicians. OHSU, CHRCO, Talks on TIRCON to conference attendees
Garching, Germany, March 13-14, 2013, at the 8th International Congress "Forum Life Science"
Bayerische Forschungsallianz, Information booth at the 8th International Congress "Forum Life Science" on recent developments and scientific results in Pharma Developments, Food & Nutrition and Industrial Biotechnology
Warsaw, March 2-3, 2013, at Pediatric Clinic Conference for International Child Neurologist
Tomasz Kmiec (CMHI), Talk on "NBIA - PKAN and MPAN in children" at the Pediatric Clinic Conference for International Child Neurologist, organized by the Neurometabolic School Oltarzew
Essen, Germany, February 23, 2013, at the International Rare Diseases Day
Hoffnungsbaum e.V., Information booth at the International Rare Diseases Day in Essen
