Useful Websites
Useful Websites
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Below you can find lipodystrophy resources specific to Canada, and beyond. Our resource list will continue to expand, as we update it on an ongoing basis. If you know of any beneficial resources that we have not been listed below, contact us and let’s connect.
Lipodystrophy United is the only national USA-based support group for individuals and caregivers affected by lipodystrophy. There is a good amount of Canadian-based community members in this group, and a variety of relevant supports.
Lipodystrophy Resources
Lipodystrophy UK is an expert organization that is a reference for the kind sof work we will do here at Lipodystrophy Canada. They raise awareness of lipodystrophy, and support those who may be affected by lipodystrophy and advocate for excellent clinical care and scientific research into these conditions. While they are UK-based, their resources are instrumental for those with lipodystrophy internationally.
European Consortium of Lipodystrophies (EU + SWANA)
This is a great catalogue that compiles support groups across EU and SWANA countries.
Rare Disease Resources
National Organization for Rare Disorders (NORD)
NORD is one of the first American based, national nonprofits to represent all individuals and families affected by rare disease and they work at the intersection of care, research, policy and community. You can find extensive information on Familial Partial Lipodystrophy and Congenital Generalized Lipodystrophy on their site.
Canadian Organization for Rare Disorders (CORD)
CORD is Canada’s national network for organizations representing all those with rare disorders. They advocate for health policy and a healthcare system that works for those with rare disorders and works alongside governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Rare Disease Information and Support Centre (RQMO)
RQMO is a Quebec based National Organization with extensive resources that educates and supports individuals (all ages), that are affected by a rare disease, while also providing resources for their caregivers and health professionals through its iRARE Centre. Which is an information and support centre for rare diseases.
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