Resources
This page may look sparse, and don’t get too excited about what you’ll find here, but that’s the reality for people living with Madelung’s disease. Part of the purpose of this website is to address just how few resources currently exist. The links below either provide a small amount of information, acknowledge the condition, or share related material on fatty disorders or rare diseases in general.
My hope is that, over time, more organizations will recognize Madelung’s disease, expand their coverage, and offer meaningful support. I’ll continue to add resources here as they become available.
GARD: Genetic and Rare Diseases Information Center
NORD: National Organization for Rare Disorders
Currently acknowledges Madelung’s disease but provides little detail. NORD offers community and support for people with rare diseases.
Fat Disorders Resource Society
Website
Madelung’s disease is not a focus, but some information about other fat disorders may be relevant.
Facebook page includes posts about Madelung’s disease; use the search bar to locate them.
NIH – National Library of Medicine Clinical Trials
At the time of writing, there are no active clinical trials for Madelung’s disease, but it’s worth checking periodically in case new studies are posted.
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