Children's Mitochondrial Disease Network

Mayfield House
30 Heber Walk
Chester Way
Northwich
CW9 5JB

Tel (Helpline): 01606 43946
Fax: 01606 43946
Web: www.emdn-mitonet.co.uk
Best time to telephone: normal working hours and beyond

The Children's Mitochondrial Disease Network is the official working name of EMDN, The European Mitochondrial Disease Network, the only registered charity in the UK concentrating on the specialities and complexities of Mitochondrial Disorders in children and adults. The charity has the following aims and objectives.

• The promotion of published research into the causes and treatment of Mitochondrial Encephalomyopathies / Cyopathies and related Mitochondrial Disorders in children and adults and pre-natal diagnosis.
• To provide advice, support and information to parents, carers of both children and adults with the above diseases, and to professionals.
• To provide financial support to professionals to attend relevant meetings etc and to assist publication of conference proceedings.

The following services are provided.

• Membership for an annual fee. Please telephone for a membership form.
• Information available in lay-terms, via Helpline and email for parents and professionals.
• Regular newsletters and updates, disease specific searches, information packs, disability and benefits advice.
• Annual professional and parental meeting, annual sponsored scientific meetings. Full medical advisory committee and correspondents.

The following Mitochondrial Disorders are represented by the Network: Alpers Disease; Barth Syndrome (Cardiomyopathy); Carnitine Deficiency; Kearns-Sayre Syndrome (KSS); Lethal Infantile Mitochondrial Disease (LIMD); Laigh's Disease/Syndrome (LD/LS); Luft Disease; Leber's Hereditary Optic Neuropathy (LHON); Mitochondrial Cytopathy; Mitochondrial Encephalomyopathy; Mitochondrial Myopathy: infant, child & adult onset; Mitochondrial DNA Deletions, Point Mutations & Depletions (mtDNA); Nuclear Encoded DNA Defects (nDNA); Mitochondrial Encephalomyopathy, Lactic Acidosis & Stroke-like Episodes (MELAS); Neuropathy, Ataxia & Retinitis Pigmentosa (NARP); Progressive External Ophthalomglia (PEO); Pearson Marrow Syndrome; Cytochrome C Oxidase Deficiency type A, B, C (COX); Pyruvate Dehydrogenase Deficiency Complex E1 & E2 (PDH); Pyruvate Carboxylase Deficiency (PCH); Phosphoenolpyruvae Carbokinase Deficiency (PEPK); Hypertrophic Cardiomyopathy (HMC); Mitochondrial Fatty Oxidation Disorders (MCAD, MCHAD, SCAD, LCAD, VLACD, CPI & II, ETF, GAII, MADD, HMG; Oxidative Phosporylation Diseases; MENKES Disease; MINGIE Disease.

 
Checked: May 2006