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Past Events 2012

Beuggen/Rheinfelden, Germany, December 14-15, 2012, at EPNS Research Meeting
Holger Prokisch (TUM), Talk on NBIA at the European Pediatric Neurology Society Research Meeting 2012
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"
Angelika Klucken (HoBa), Talk on "TIRCON - Collaborative Research for a very rare disease as a global approach under FP7. Experiences of the German NBIA patient organization Hoffnungsbaum e.V. as TIRCON-Partner" at the Council of European Federations 5th Workshop
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
Tomasz Kmiec (CMHI), Talk on “Clinical course and findings results in PKAN and MPAN types of NBIA” at the 10th European Conference on Rare Orphan Diseases entitled “Bring nearer Rare 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