RESOURCES
Muscular Dystrophy Canada really helped me cope with my diagnosis. Their support for me and my family has been invaluable.
– Joel*
Muscular Dystrophy Canada
A non-profit organization that provides resources and support for people living with muscular dystrophy.
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YouTube channel
Muscular Dystrophy Canada hosts its own YouTube channel on muscular dystrophy.
View the channel
Contact details
Local service specialists are available in each province and territory across Canada.
To connect with a service specialist near you, please contact:
Josée Bray
josee.bray@muscle.ca
1-800-366-8166 Ext. 1201
Canadian Association of Pompe
A non-profit society that helps create awareness of Pompe disease and supports people living with Pompe.
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YouTube channel
The Canadian Association of Pompe hosts its own YouTube channel on Pompe disease.
View the channel
Here are some videos from their channel:
Timely diagnosis and treatment
Julie – Pompe disease, knowing is half the battle
Pompe Disease – Diagnosis is a Simple Blood Test
Contact details
Brad Crittenden, Executive Director
Canadian Association of Pompe
Association canadienne de Pompe
brad@pompecanada.com
250-488-2571
Research organizations
Canadian Neuromuscular Diseases Network (CANNMD)
A network of all interested stakeholders across neuromuscular disease. This network contributes to the delivery of clinical care and scientific research for these diseases, and provides education and training for neuromuscular and rare diseases.
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Canadian Neuromuscular Disease Registry
A nation-wide registry of people living with a neuromuscular disease. The information collected in this registry is used to improve the understanding of neuromuscular disease, facilitate research and promote the development of therapies.
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