Talk and Resources - Links

UK and Global MTM/CNM-Specific Websites:

 

uK


The Myotubular Myopathy and Centronuclear Myopathy Information Point centronuclear.org.uk/theinformationpoint/index.html

Europe/USA


ZNM Zusammen Stark! www.znm-zusammenstark.org
Christian Weber's German MTM Website www.mtmx.de/
The Joshua Frase Foundation www.joshuafrase.org/
USA MTM and CNM Family Conference 2009 www.mtm-cnm.com/
Joey Wells Poetry joeywells.net/
MTM Resource Group www.mtmrg.org/
Where There's A Will There's A Cure www.will-cure.org/  
The RYR1 Foundation www.ryr1.org/  

Neuromuscular Websites From around the World

 

UK

Muscular Dystrophy Campaign www.muscular-dystrophy.org/

Muscular Dystrophy Campaign Hub - mapping out services such as hydrotherapy pools etc., across the UK that may be helpful for people with myotubular myopathy. hub.muscular-dystrophy.org

South West Neuromuscular Network http://www.swscg.nhs.uk/networks/Neuromuscular/Neuromuscular.htm

Winsford, Cheshire - The Neuromuscular Centre http://www.nmcentre.com/

Ireland

Muscular Dystrophywww.mdi.ie/hy Ireland

Europe

Belgium - NEMA www.nema.be/

Denmark - Muskelsvindsfonden www.rcfm.dk/om-muskelsvind/sygdomsbeskrivelser/kongenit-myopati/myotubular-myopaticentronuclear-myopati/

Finland - The Finish Neuromuscular Disorders Association www.lihastautiliitto.fi/

France - AFM www.afm-france.org/afm-english_version/

Germany - DGM Deutsche Gesellschaft für Muskelkranke e.V www.dgm.org/

Italy - Unione Italiana Lotta alla Distrofia Muscolare www.uildm.org/

Netherlands - Vereniging Spierziekten Nederland www.vsn.nl/

Poland - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi
(Association for Children with Genetic Disorders) www.gen.org.pl/

Portugal - APN www.apn.pt/

Spain - BENE Asociación de Enfermos Neuromusculares de Bizkaia Centro Cívico Bidarte www.asociacionbene.com/

Switzerland – ASRIM www.asrim.ch/fr-ch/asrim/accueil.html

Canada and United States

Canada - Muscular Dystrophy Association of Canada muscle.ca/

USA - Muscular Dystrophy Association of US www.mda.org/

Australia

Muscular Dystrophy Association of Australia www.mda.org.au/

South Africa

Muscular Dystrophy Association of South Africa www.mdsa.org.za/