Since more than two decades, ENRAH is Europe's and the world's professional organisation dedicated to biomedical research strategies for AHC and ATP1A3 diseases.

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ENRAH advances research and effective therapies for Alternating Hemiplegia of Childhood and related diseases by:

Generating research

• Involve front line researchers and medical experts as members and in collaborations;
• review literature and identify potential areas for research development;
• design and submit for funding research projects.

Coordinating research activities

• Reinforce its links and collaborations with the national clinical centres of AHC expertisereinforce its links and collaborations with the AHC family groups and organisations;
• advise AHC family /patients groups and organisations on their research funding activities;
• facilitate research collaborations - organise workshops and other networking events.

Translating and disseminating research

• Review and update  guidelines on diagnosis and management of AHC for patients and professionals;
• provide validated information on AHC for patients and families – web pages, handbooks and through its links and members worldwide.

ATP1A3 in disease Symposium (pdf) 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 (pdf)

ENRAH for SMEs project (pdf) (2005-2007) funded by the FP6 Research Program of the European Union

The first web based Registry (pdf) 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 (pdf) 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.

ENRAH was founded by a group of supporters and registered in the spring of 2003 in Vienna, Austria.
Registration number ZVR-Zahl 542743764.

For information and enquiries:
Email to: ts@enrah.net


For donations:

Bank:
easybank AG, Quellenstrasse 51-55, A-1100 Vienna, Austria
IBAN: AT511420020010398003
BIC: EASYATW1