enrah
European Network for Research on Alternating Hemiplegia
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About ENRAH » Projects
  •  ATP1A3 in disease  Symposium since 2012
  • ENRAH, together with the group of  Prof. David Goldstein from Duke University,  organised the Symposium ATP1A3 in disease on 10 and 11 December 2012 in Brussels, Belgium. The meeting resulted in a review paper in Lancet Neurology and set up the annual meetings ATP1A3 disease.
  •   nEUroped project (2008-2011) co-funded by the Public health Program of the European Union 
Following the successful closure of the FP6  funded project, in 2007 ENRAH  submitted  and won a grant from  the European Commission  for further development of the European  AHC registry and establishing  European Guidelines for AHC treatment and diagnosis  of AHC, narcolepsy and rare surgically treatable epilepsies . The project, European Network for Rare Paediatric Neurological Disorders (nEUroped)  ran from 2008 till  2011  under the coordination of HCL, France  with 13 partners.
Summary of nEUroped  
The first web based Registry of  158 patients with Alternating Hemiplegia in Childhood (AHC)  from 8 European countries was achieved  by the  ENRAH for SMEs.The project has been featured in the DG Research and Innovation's report  on rare diseases and under the 2013 Headlines Preparing the way for the understanding of a rare neurological disease. Publications  and outcomes from the project:
-The Multiple Faces of the ATP1A3-Related Dystonic Movement Disorder. Roubergue  et al. Mov Disord. 2013 Sep;28(10):1457-9.
- De novo mutations in ATP1A3 cause alternating hemiplegia of childhood. Heinzen et al.Nat Genet. 2012 Sep;44(9):1030-4
- Alternating hemiplegia of childhood: metabolic studies in the largest European series of patients. Fons C et al. Eur J Paediatr Neurol. 2012 Jan;16 (1):10-4.
- Evidence of a non-progressive course of alternating hemiplegia of childhood: study of a large cohort of children and adults. Panagiotakaki  et al. Brain. 2010 Dec;133:3598-610.
- Absence of Mutation in the SLC2A1 Gene in a Cohort of Patients with Alternating Hemiplegia of Childhood (AHC). Vuillaumier-Barrot  et al. Neuropediatrics. 2010 Dec;41(6):267-9.
- The treatment and management of alternating hemiplegia of childhood. Neville BG, Ninan M. Dev Med Child Neurol. 2007 Oct;49(10):777-80. Review.

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