Project RDAC – Frequently Ask Questions
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 10,000 currently known rare diseases impacting the lives of more than 30 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 distinguishing features include the type of entity that houses the RDAC, the composition and size of the council and its duties and accountability requirements.
How many RDACs currently exist?
Currently, there are twenty-nine states that have enacted legislation establishing a RDAC, supporting the rare disease community and proving that RDACs can be an invaluable resource.
Who may serve on an RDAC?
RDAC membership typically includes a variety of stakeholders including patients, caregivers, patient organizations, doctors, nurses, insurers, biotech representatives, health care facility administrators, pharmacists, geneticists, researchers and state officials.
How can I find out if my state has an RDAC?
Twenty-nine 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 contact us to start an effort in a new state.