Patient Resources

Partial Lipodystrophy, co-founder of Lipodystrophy United

Patient Organizations


The list below identifies many organizations with which we are most familiar, or with whom we most frequently collaborate, especially within the communities of rare disease.

Rare Disease Organizations

Huntington’s Disease

Myotonic Dystrophy type 1 (DM1)

Spinal Muscular Atrophy (SMA)

Partial Lipodystrophy

Transthyretin Amyloidosis