Family Support Resources

Support and Advocacy Groups

  • Lipodsytrophy United is an global non-profit dedicated to increasing awareness and supporting the lipodystrophy community.
  • The Global Genes Project one of the leading rare and genetic disease patient advocacy organizations in the world. The Global Genes Project’s mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.
  • Genetic Alliance is a leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
  • is a website created to provide information about Lipodystrophy, support to those with the condition, family and friends.
  • Asociación Española de Lipodistrofias is a non profit organization in Spain created to increasing awareness and supporting the lipodystrophy community in Spain.

Research and Clinical Trial Resources

  • is a registry and results database of publicly and privately supported clinical studies of human participants conducted in the United States and around the world. The website is maintained by the National Library of Medicine. You can search for studies by topic and find out more information about a study’s purpose, who may participate, locations and phone numbers for more details.
  • PubMed is a searchable database of published scientific research articles maintained by the National Library of Medicine. This site is designed for researchers and clinicians and contains journal articles about research in Lipodystrophy conditions.
  • Office of Rare Diseases Research (ORDR) website aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.
  • Global Rare Diseases Patient Registry and Data Repository (GRDR) is a pilot project launched by the Office of Rare Diseases Research (ORDR). The goal is to establish a data repository of de-identified patient data, aggregated in a standardized manner, to enable analyses across many rare diseases and to facilitate various research projects, clinical studies, and clinical trials.