Living with a rare disease is often accompanied by a newfound role of navigating insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you won’t want …
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Health equity is the state in which everyone has a fair and just opportunity to attain their highest level of health. In the rare disease community, inequities exist in the long odyssey to diagnosis and the difficulties in accessing treatments that many patients and families face. However, there is so much more at play in …
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Listen to a rare family share their story of living rare, living stronger and be inspired by how they’ve taken “rare action” to fight for the rare disease community.