Curating & sharing ideas for rare disease policy from around the world
Rare disease policy
(noun) rare dis·ease pol·i·cy
\ 'rer \ di-'zēz \ 'pä-lə-sē
1 : the decisions, plans, and actions that are undertaken by the whole of government and informed by the whole of society to achieve specific goals for improving the lives of people living with a rare disease and their families
2 : the government policies that cover topics of financing and delivery of healthcare, access to care, and quality of care to people living with a rare disease and their families
3 : a combination of public health policy, healthcare services policy, insurance policy, regulatory policy, pharmaceutical policy, medical research policy, health workforce policy, trade policy, and foreign policy working in concert to improve the lives of people living with a rare disease and their families
Promise
Bite-sized info sent every month to your email inbox on innovative partnerships and public policies, together with fresh perspectives from familiar faces of the global rare disease community
Goal
Helpful content worth sharing; with policy & partnership ideas worth trying—from the plain obvious to those rarely considered
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