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.
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.
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.
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.