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Project RDAC – FAQs

What is a Rare Disease Advisory Council (RDAC)?

A Rare Disease Advisory Council (RDAC) acts as an advisory body that provides the rare community with a stronger voice in state government. RDACs give stakeholders an opportunity to make formal recommendations to state leaders on critical rare disease issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures.

Why are RDACs important to rare disease advocacy on the state level?

Decisions are made every day in state government that affect the entire rare community. For example, states play a critical role in ensuring rare disease patient have access to the health care providers, services and treatments they need to thrive, as well as the design of their Medicaid program benefits and regulation of some health insurance plans. RDACs provide a forum for discussion of these important issues.

There are over 7,000 currently known rare diseases impacting the lives of more than 25 million Americans and their families. Information can be scarce, resources limited, and patients are scattered around the nation, creating an environment in which individuals and families face a myriad of challenges in every state. It can also be difficult for state policymakers and government officials to have an in-depth understanding of the entire rare disease community. This lack of awareness contributes to common obstacles that rare disease patients face, such as delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs and limited access to medical specialists.  

How are RDACs organized?

RDACs are organized differently in each state. Some of the distinguishing features include the type of entity that houses the RDAC, the composition and size of the council and the duties and accountability requirements of the council.

How many RDACs currently exist?

Advocates in twenty-one states have successfully established an RDAC, and stakeholders in several other states have sought to create one to better represent their community and articulate its need to those in power.

Who may serve on an RDAC?

RDAC members typically includes a variety of stakeholders including patients, caregivers, doctors, insurers, biotech, researchers and state officials.

How can I find out if my state has an RDAC?

Twenty-one states so far have enacted RDAC legislation. Check out this map to see if your state has one or if NORD is working on legislation to create one.

What can I do to advocate for an RDAC in my state?

Check our map to see if there is an existing advocacy effort you can join, or reach out to [email protected] to start an effort in a new state.