Inherited or Acquired Lipodystrophy Information and Resources

Fund Status and Eligibility

Fully Allocated - Effective 06/05/2018, we are unable to process applications that are pending or accept new or renewal applications at this time. Should additional funding for Inherited or Acquired Lipodystrophy Fund applicants become available in the future, it will be necessary to re-apply if assistance is still needed.

Maximum Award Level: $7,500 Per Year

Eligibility Criteria

  • Patient must be insured and insurance must cover the medication for which patient seeks assistance.
  • Patient must have a confirmed diagnosis of Inherited or Acquired Lipodystrophy.
  • Patient must reside and receive treatment in the United States.
  • Patient's income must fall below 400% of the Federal Poverty Guideline (FPG) with consideration of the Cost of Living Index (COLI) and the number in the household.

Get Help With Your Treatment: How to Apply Online

Information About the Disease

Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue.

The extent of fat loss may determine the severity of metabolic complications related to insulin resistance, such as diabetes mellitus and high levels of serum triglycerides. Some patients may have only cosmetic problems while others may also have severe metabolic complications. These disorders can either be inherited (familial or genetic) lipodystrophies or can be secondary to various types of illnesses or drugs (acquired lipodystrophies).
The following is a listing of the types of Lipodystrophy:

Inherited
• Inherited: Congenital Generalized (CGL; Berardinelli-Seip Syndrome)
• Inherited: Familial Partial, Dunnigan Variety (FPLD)
• Inherited: Familial Partial, Mandibuloacral Dysplasia Variety (FPL-MAD)
• Inherited: Familial Partial, Kobberling Variety and Other Types
• Inherited: SHORT Syndrome
• Inherited: Neonatal Progeroid Syndrome (Wiedemann-Rautenstrauch syndrome)
• Progeria (Hutchison - Gilford syndrome)
• Atypical Progeria Syndrome

Acquired
• Acquired: Generalized Lipodystrophy (AGL; Lawrence Syndrome)
• Acquired: Lipodystrophy in HIV infected Patients (LD-HIV)
• Acquired: Partial Lipodystrophy (Barraquer-Simons Syndrome)
• Acquired: Localized

Resources

National Organization for Rare Disorders

Phone: 800-999-6673 - http://nordphysicianguides.org/lipodystrophies/

Lipodystrophy United

Phone: 209-845-7273 - http://www.lipodystrophyunited.org/

Lipodystrophy United Resources

Phone: 209-845-7273 - http://www.lipodystrophyunited.org/research.html

National Institute for Advancing Translational Sciences/ Office of Rare Diseases Research /Genetic and Rare Diseases Information Center (GARD)


Phone: 301-402-4336 - http://rarediseases.info.nih.gov/gard/6909/lipodystrophy/resources/1

National Institute of Health-Clinical Trial Center

Phone: 301-496-4121 - http://cc.nih.gov/translational-research-resources/diseases/lipodystrophy.html

 

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