Description
Delaware Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Delaware legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could address the needs of those living with a rare disease in Delaware by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.
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