Rare disease advocacy often intersects with the complex world of health insurance. With some health benefit plans regulated by the
federal government and others regulated by states, or by both, novice and experienced advocates are left wondering where to begin.
This primer provides an overview of each type of insurance and offers practical guidance on advocating for improvements within each
system. By gaining a clear understanding of these systems, advocates will be better prepared to help rare disease patients receive the
comprehensive care they deserve.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
