Because of their rarity, rare diseases often aren’t considered or represented in the government. But state by state, we are slowly gaining representation within the legal system. This is being done through Rare Disease Advisory Councils (RDACs), which are advisory groups comprised of patients, caregivers, doctors, advocates, researchers, and other healthcare providers that act as a bridge between the rare disease community and the government. Georgia is the most recent state to add a council after the governor, Brian Kemp, signed legislation.

The RDAC’s job is to advise the Georgia General Assembly and other agencies within the government so that their decisions and actions reflect the interests of rare disease patients. Beyond this, they will conduct surveys, compile various resources, and work with experts in their fields.

This recent development makes Georgia the 22nd state to add an RDAC to their government. This is an extremely positive step forward, especially for the National Organization for Rare Disorders’ (NORD) Project RDAC, which has a goal of increasing the number of states with an advisory council. The initiative has been extremely successful since its 2020 launch, with six states joining the ranks in 2021 alone.

Looking Forward

In the future, NORD will continue to focus on establishing more RDACs across the country. This way, there will be more patient voices heard in state governments throughout the country, which will increase support and action. Want to learn more about NORD’s work in policy and legislation? You can find more information here.

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