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Lipodystrophy United
Lipodystrophy United
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  • About LU
    • World Lipodystrophy Day
    • LU Symposia
    • Schedule of Events
    • About Us
    • Our History
    • Our Team
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lunch and Learn
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Donate
    • Volunteer
    • Engagement Opportunities
  • More
    • Home
    • About LU
      • World Lipodystrophy Day
      • LU Symposia
      • Schedule of Events
      • About Us
      • Our History
      • Our Team
    • What is Lipodystrophy
      • The Basics
      • Types
      • Research and News
    • Patient Corner
      • Guides to Lipodystrophy
      • Stories & Community
      • Expert Centers
      • Lunch and Learn
      • Clinical Trials
      • Rare Disease Resources
    • Get Involved
      • Donate
      • Volunteer
      • Engagement Opportunities
  • Home
  • About LU
    • World Lipodystrophy Day
    • LU Symposia
    • Schedule of Events
    • About Us
    • Our History
    • Our Team
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lunch and Learn
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Donate
    • Volunteer
    • Engagement Opportunities

Rare disease resources

NORD

Everylife Foundation for Rare Diseases

Global Genes

The National Organization for Rare Disorders (NORD) supports the lipodystrophy community by offering educational resources, assistance programs, advocacy tools, and national representation in research and policy.

Learn More

Global Genes

Everylife Foundation for Rare Diseases

Global Genes

Global Genes supports the rare disease community by providing education, advocacy resources, and opportunities for connection and collaboration to empower patients, caregivers, and organizations worldwide. Take a look at their toolkits! 

Learn More

Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

The EveryLife Foundation supports the lipodystrophy community by advocating for science-driven public policy and empowering patients to advance rare disease research and access to treatments.

Learn More

5 steps for navigating a Lipodystrophy Diagnosis

Step 1: Gather Key Information

  • Where the diagnosis was done 
  • Clinician who diagnosed you
  • Copies of Assessment reports, medication prescriptions, diagnostic and imaging tests

Step 2: Look into Government Resources

  • Check eligibility for Medicaid, Medicare, and Social Security programs

Step 3: Start to Build a Healthcare Team

  • There are only a few lipodystrophy experts in the US, making it difficult for patients to find knowledgeable care. Seek an endocrinologist willing to learn about the disease and work in partnership with you to personalize your care. 

Step 4: Get to Know your Insurance Policy

  • Eligibility requirements
  • Benefits
  • Regulatory information
  • Grievance procedures

Step 5: Ask for an Insurance Case Manager

Learn More

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EIN: 46-1165699

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