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.

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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!

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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.

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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

Rare disease resources

NORD

Everylife Foundation for Rare Diseases

Global Genes

Global Genes

Everylife Foundation for Rare Diseases

Global Genes

Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

Everylife Foundation for Rare Diseases

5 steps for navigating a Lipodystrophy Diagnosis

Step 1: Gather Key Information

Step 2: Look into Government Resources

Step 3: Start to Build a Healthcare Team

Step 4: Get to Know your Insurance Policy

Step 5: Ask for an Insurance Case Manager

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