Past Events 2012
Beuggen/Rheinfelden, Germany, December 14-15, 2012, at EPNS Research Meeting
Oregon, USA, December 6, 2012, at Grand Rounds on BPAN
Susan Hayflick (OHSU), Organization of Grand Rounds on “A new neurodegenerative disorder induces humility” bringing together 30 attendees, mostly geneticists and genetic counselors as well as trainees
Cambridge, November 28, 2012, at MRC in Cambridge
Holger Prokisch (TUM), Talk on “Exome Sequencing in Mitochondrial Disorders as Tool to Advance our Understanding of the Mitochondrial Physiology” at the Medical Research Council in Cambridge
Genova, Italy, November 22, 2012, at Scientific Meeting on Pediatric Movement Disorders
Valeria Tiranti (FINCB), Talk on “An integrated approach to neurodegeneration with brain iron accumulation: is it just a matter of iron?”, presenting Pank2mouse model, at the Scientific Meeting on Pediatric Movement Disorders, organized by the “Mariani Foundation”
Berlin, November 10, 2012, at ACHSE Symposium „Empowerment of lay advocacies“
Heike Jaskolka (HoBa), Talk on “Starting into a new era of research and lay advocacies: the research project TIRCON and the NBIA Alliance” at the ACHSE Symposium “Empowerment of lay advocacies”
San Francisco, November 7, 2012, at Annual Meeting of the ASHG
Susan Hayflick (OHSU), Moderation of the session “Metabolism, metals, and neurodegeneration: Toward enhanced understanding of disease mechanism and rational therapeutics” and talk on NBIA at the Annual Meeting of the American Society of Human Genetics
Huntington Beach, USA, November 1, 2012, at 41st Child Neurology Society Conference
CHRCO, OHSU, NBIADA, Presentation of the TIRCON project at the 41st Child Neurology Society Conference in Huntington Beach
Paris, October 31, 2012, at Council of European Federations 5th Workshop, CEF Training: "Research coordination & promotion"
Ede, October, 27, 2012, at 2nd Joint International Symposium on NA & NBIA
LMU, TUM-MED, OHSU, UMCG, HoBa, Talks on NBIA and TIRCON at the 2nd Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with brain iron accumulation
Poznan, Poland, October 12-13, 2012, at III. Forum of Child Neurology
Tomasz Kmiec (CMHI), Talk on “Clinical course and findings results of patients with atypical, late type of NBIA – MPAN with new found mutation C19orf12” at the III. Forum of Child Neurology entitled “Progress and barriers in Child Neurology”
Cincinnati, USA, September 23, 2012, at Cincinnati Children’s Hospital Medical Center, NBIA & TIRCON Lecture
Susan Hayflick (OHSU), Lecture on NBIA and TIRCON for child neurology trainees at the Cincinnati Children’s Hospital Medical Center
Cedzynia, Poland, July 15, 2012, at 10th European Conference on Rare Orphan Diseases
Bern, Switzerland, July 12-13, 2012, at mitoNET Congress
Thomas Klopstock (LMU), Thomas Meitinger (LMU), Holger Prokisch (TUM), Talks on clinics, pathomechanism, diagnostics and therapy of NBIA at the mitoNET Congress
Hohenroda, Germany, June 21-24, 2012, at 6th NBIA Family Conference in Germany, TIRCON Workshop
LMU, TUM, BayFOR, HoBa, TIRCON-Workshop entitled “Starting into a new era of research and medical care in NBIA” at the 6th NBIA Family Conference in Germany, organized by HoBa
Wisla, Poland, May 31 – June 2, 2012, at 5th Symposium – Extrapyramidal Diseases Association of Polish Neurology Society
Tomasz Kmiec (CMHI), Talk on “Clinical course and findings results of patients with atypical, late type of NBIA – MPAN with new found mutation C19orf12” at the 5th Symposium – Extrapyramidal Diseases Association of Polish Neurology Society
Brisbane, Australia, May 27 – June 1, 2012, at 12th International Child Neurology Congress
Susan Hayflick (OHSU), Talk on "Update on NBIA: PKAN and related syndromes" at the 12th International Child Neurology Congress in Brisbane
Brussels, May 25, 2012, at European Conference on Rare Diseases
Thomas Klopstock (LMU), Angelika Klucken (HoBa), Poster presentation on “TIRCON: An Integrated Strategy for Research, Drug Development and Care under FP7” at the European Conference on Rare Diseases
Munich, May 5, 2012, at LMU, NBIA-lecture
Thomas Klopstock (LMU), Lecture on NBIA entitled “Therapy meeting neurology” at the LMU Munich
Münster, Germany, April 19-21, 2012, at GNP Congress
Hoffnungsbaum e.V., Information booth at the congress of GNP, the medical association of neuropediatricians in Germany, Austria and Switzerland
Berlin, March 22-24, 2012, at Jubilee Conference of Kindernetzwerk e.V.
Angelika Klucken (HoBa), Participation in the Jubilee Conference of Kindernetzwerk e.V. which dealt with the health care situation of children, adolescents and young adults with diseases or with special needs
Düsseldorf, Germany, March 6, 2012, at Plenary Discussion on Rare Diseases of the Düsseldorfer Jonges e.V.
Angelika Klucken (HoBa), Participation in the plenary discussion on „Rare Chronic Diseases in Germany – Rarity as well as Reality“ of the Düsseldorfer Jonges e.V.
Oakland, USA, February 29, 2012, at Oregon Health & Science University’s 2012 Rare Disorders Research Consortium Conference
Susan Hayflick (OHSU), Talk on NBIA and TIRCON at the Oregon Health & Science University’s 2012 Rare Disorders Research Consortium Conference
Berlin, February 29, 2012, at Symposium of ACHSE e.V. on Rare Diseases
Angelika Klucken (HoBa), Participation in the Symposium of ACHSE e.V. on “Rare but strong together – finding better ways for people with rare disease”
Berlin, February 28, 2012, at Awarding Ceremony of the Eva Luise Köhler prize for research in Rare Diseases
Angelika Klucken (HoBa), Talk at the Awarding Ceremony of the Eva Luise Köhler prize for research in Rare diseases