ABOUT RDAC's

The Rare Disease Advisory Council (RDAC) serves as a crucial platform for elevating the voice of the rare disease community within state governments. These councils are designed to address the unique challenges faced by individuals with rare diseases, such as delays in diagnosis, limited treatment options, and high healthcare costs. RDACs enable states to identify and tackle barriers in healthcare access and treatment for rare disease patients, leveraging the expertise of patients, caregivers, and healthcare providers to inform and shape state policies.
By providing targeted recommendations and advocacy, RDACs help ensure that rare disease issues are considered in legislative and regulatory processes. Each council is tailored to address specific state needs, making it a vital tool for improving patient care and access to treatment. RDACs facilitate a collaborative approach to policy development, allowing stakeholders to work together to overcome obstacles and enhance the quality of care for individuals with rare diseases. This proactive involvement at the state level ultimately contributes to better health outcomes and a more equitable healthcare system for the rare disease community.

CURRENT SITUATION & ISSUE

With over 7,000 known rare diseases affecting more than 30 million Americans, state policymakers often struggle to fully understand and address the specific needs of this community. 
The rarity and complexity of these conditions lead to common obstacles such as delays in diagnosis, misdiagnosis, limited treatment options, high out-of-pocket costs, and restricted access to specialized care. 
This lack of comprehensive state-level awareness and strategic focus often results in insufficient policy responses and inadequate support for individuals living with rare diseases.

HOW THE RDAC HELPS TO FIX IT

The Rare Disease Advisory Council (RDAC) offers a targeted solution by acting as an advisory body within each state to address the unique challenges faced by rare disease patients. 
RDACs bring together patients, caregivers, healthcare providers, and other stakeholders to provide expert input and recommendations on how to improve state policies and practices related to rare diseases. 
By tailoring their efforts to the specific needs of each state, RDACs help identify and overcome barriers to diagnosis, treatment, and care. They facilitate more informed decision-making and policy development, ensuring that rare disease issues are effectively addressed and that patients receive the necessary support and resources. 
This strategic approach enhances the quality of care and access to treatment for individuals with rare diseases across the country.

WHAT IT SEEKS TO DO

The Rare Disease Advisory Council (RDAC) aims to improve state-level support and policy for individuals with rare diseases by establishing advisory councils in every state. 
These councils are designed to provide a structured platform for rare disease stakeholders—including patients, caregivers, and healthcare providers—to collaborate and advise state governments on the specific needs and challenges of the rare disease community. 
By creating RDACs, the bill seeks to enhance the state’s ability to address issues such as delays in diagnosis, limited treatment options, and high out-of-pocket costs. 
The councils work to develop and implement policies that ensure better access to care and support for rare disease patients, thus improving overall health outcomes and policy responsiveness at the state level.
• Establish RDACs: Creates a framework for establishing Rare Disease Advisory Councils in all states.
• Stakeholder Collaboration: Brings together patients, caregivers, and healthcare providers to provide expert input.
• Policy Recommendations: Advises state governments on effective policies and practices for addressing rare disease challenges.
• Improve Access: Works to enhance access to diagnosis, treatment, and care for rare disease patients.
• State-Level Focus: Tailors efforts to address the specific needs and barriers faced by rare disease patients in each state.

HORDAC'S BENEFIT OUR COMMUNITIES

NEXT STEPS TO ADVOCATE FOR IT

1.

Check Our Policy Map To See If Your State Has An RDAC
To determine if your state has a Rare Disease Advisory Council (RDAC), check our Policy Map. This interactive tool provides up-to-date information on the establishment of RDACs across the country, highlighting which states have implemented these councils. By using the map, you can easily identify whether your state has an RDAC in place or if there are ongoing efforts to establish one. This resource helps you stay informed about the presence and status of RDACs, allowing you to understand better the support and advocacy infrastructure available in your area for rare disease issues. If your state has an RDAC then you can reach out and see how you can get involved. If your state does not have an RDAC, keep working through the steps to advocate for one.
FIND THE BILL

2.

Find & Get Contact Info For Your Representatives
Identifying your federal and state representatives is crucial for targeted advocacy. You can use our “Find Your Representatives” page by clicking the button below to find your representatives’ contact information, including their phone numbers, email addresses, and office locations.
FIND YOUR REPRESENTATIVES

3.

Create A One-Pager
Now that you know that your state does not already have an RDAC, you can create a one-pager prior to contacting them so that you have it ready to go should you need it quickly. If you have not heard of a one-pager before, a one-pager is a concise document summarizing the key aspects of the bill. This should include a brief summary of the bill, its benefits, relevant statistics, and a personal story to humanize the issue. The one-pager should also contain a clear call to action, specifying what you want the reader to do. It might seem intimidating, but don’t worry we created a template and guide over on our one-pager page which you can access by clicking the button below.
CREATE A ONE-PAGER

4.

Contact Your Representatives
Now that you have all the info and one-pager, it is time to contact your representatives! You can learn all about this process and access resources and guides as to what to do on our, “Contact Your Representatives” page by clicking the button below. You can prepare your talking points using your one-pager, then reach out to your representatives via email, phone calls, or by scheduling a meeting. You can then explain why creating an RDAC is important to you, how it could impact you or those you care about, and request their support. You can then provide them with your one-pager for them to have and reference after.
CONTACT YOUR REPRESENTATIVES

5.

Share About The RDAC On Social & Mainstream Media
Personal stories can be powerful advocacy tools. You can use our social and mainstream media toolkits to help you share about the bill, about your own experiences with the issue and how the creation of an RDAC would improve your healthcare. You can then go on to highlight the broader impact on patients with chronic, complex, and rare diseases. You can do this on social media as well as mainstream media to help make others aware of the legislation. While sharing about it, you can also provide resources, like this page, to help them each take action with their own representatives. This can help to get more representatives involved and move the process of the bill getting passed forward.
MEDIA TOOLKIT