Lipodystrophy United Is Back! Please frequently visit our website to see updates!
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.
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!
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.
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
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