OVERVIEW
We all know that our voices and stories matter and are important to getting legislation created and passed. One way to magnify our voices and impact is by getting our representatives involved in the fight by having them join and become part of the Rare Disease Congressional Caucus.
The Rare Disease Congressional Caucus is a bipartisan and bicameral coalition of lawmakers committed to raising awareness of rare disease issues and advancing policies to address the unique challenges faced by individuals with rare diseases. Here you can learn more about the caucus and how you can get involved!
YouTube. (n.d.). Everylife Foundation for rare diseases. YouTube. https://www.youtube.com/c/everylifefoundationforrarediseases
YouTube. (n.d.). Everylife Foundation for rare diseases. YouTube. https://www.youtube.com/c/everylifefoundationforrarediseases
OVERVIEW
We all know that our voices and stories matter and are important to getting legislation created and passed. One way to magnify our voices and impact is by getting our representatives involved in the fight by having them join and become part of the Rare Disease Congressional Caucus.
The Rare Disease Congressional Caucus is a bipartisan and bicameral coalition of lawmakers committed to raising awareness of rare disease issues and advancing policies to address the unique challenges faced by individuals with rare diseases. Here you can learn more about the caucus and how you can get involved!
WHAT IS A CONGRESSIONAL CAUCUS?
HISTORY OF THE CAUCUS
The Rare Disease Congressional Caucus was established in 2010 by Congressman Fred Upton (R-MI), who served as its original Co-Chair. Recognizing the need for legislative attention to rare diseases, Congressman Upton spearheaded the formation of the caucus to provide a dedicated platform for addressing the unique challenges faced by individuals and families affected by these conditions. Since its inception, the caucus has grown in scope and influence, evolving into a bipartisan coalition of lawmakers committed to advancing policies that improve research, diagnosis, and access to treatments for rare diseases.
The caucus expanded beyond the House of Representatives to become bicameral, with representation from both the House and Senate. In the House, Representatives Leonard Lance (R-NJ) and GK Butterfield (D-NC) currently serve as co-chairs, while Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) lead the caucus in the Senate. With over 100 members in the House, the Rare Disease Congressional Caucus continues to play a vital role in raising awareness, fostering collaboration, and advocating for legislative initiatives aimed at addressing the needs of individuals with rare diseases.
WHAT IS THE RARE DISEASE CONGRESSIONAL CAUCUS?
The Rare Disease Congressional Caucus serves as a bipartisan platform within the United States Congress for addressing the unique challenges faced by individuals and families affected by rare diseases. Comprising members from both the House of Representatives and the Senate, the caucus provides a forum for lawmakers to collaborate, share constituent concerns, and advocate for legislative initiatives aimed at improving the lives of those with rare diseases. Through briefings, hearings, and advocacy efforts, caucus members work to raise awareness about rare diseases, promote research and innovation, and advance policies that enhance access to treatments and support services.
One of the primary functions of the Rare Disease Congressional Caucus is to amplify the voices of rare disease patients and advocates in the policymaking process. By facilitating conversations between lawmakers, medical professionals, and patient communities, the caucus fosters dialogue and collaboration on critical issues affecting rare disease populations. Additionally, the caucus plays a crucial role in building bipartisan support for legislative measures that address the unmet needs of individuals with rare diseases, such as increased research funding, improved access to therapies, and enhanced healthcare infrastructure. Through its efforts, the Rare Disease Congressional Caucus strives to champion the interests of rare disease patients and drive positive change in the healthcare landscape.
WHAT IS THE RARE DISEASE CONGRESSIONAL CAUCUS?
The Rare Disease Congressional Caucus serves as a bipartisan platform within the United States Congress for addressing the unique challenges faced by individuals and families affected by rare diseases. Comprising members from both the House of Representatives and the Senate, the caucus provides a forum for lawmakers to collaborate, share constituent concerns, and advocate for legislative initiatives aimed at improving the lives of those with rare diseases. Through briefings, hearings, and advocacy efforts, caucus members work to raise awareness about rare diseases, promote research and innovation, and advance policies that enhance access to treatments and support services.
One of the primary functions of the Rare Disease Congressional Caucus is to amplify the voices of rare disease patients and advocates in the policymaking process. By facilitating conversations between lawmakers, medical professionals, and patient communities, the caucus fosters dialogue and collaboration on critical issues affecting rare disease populations. Additionally, the caucus plays a crucial role in building bipartisan support for legislative measures that address the unmet needs of individuals with rare diseases, such as increased research funding, improved access to therapies, and enhanced healthcare infrastructure. Through its efforts, the Rare Disease Congressional Caucus strives to champion the interests of rare disease patients and drive positive change in the healthcare landscape.
MISSION, PURPOSE, PEOPLE INVOLVED & HOW IT WORKS
The mission of the Rare Disease Congressional Caucus is to represent constituent concerns about disease and health-related issues, influence legislation to assist citizens and families affected by rare diseases, and to facilitate conversations between the medical and patient communities.
At the core of its purpose, the Rare Disease Congressional Caucus seeks to amplify the voices of rare disease patients and advocates in the policymaking process. It is deeply rooted in advocating for policies and initiatives that benefit individuals affected by rare diseases.
With bipartisan representation from both the House of Representatives and the Senate, the caucus serves as a vital platform for addressing the unique challenges faced by rare disease communities. The caucus brings together lawmakers from across the political spectrum to collaborate, share insights, and champion legislative efforts aimed at improving research, diagnosis, and treatment options for rare diseases.
Through regular meetings, briefings, and hearings, caucus members engage with stakeholders from the medical and patient communities to discuss pressing policy issues, propose solutions, and raise awareness about the challenges faced by those living with rare diseases.
By fostering bipartisan collaboration and building consensus on legislative initiatives, the caucus plays a pivotal role in driving progress and advancing policies that address the unmet needs of individuals with rare diseases. Through its dedicated efforts, the Rare Disease Congressional Caucus aims to enhance the quality of life for rare disease patients and promote health equity for all.
YouTube. (n.d.). Everylife Foundation for rare diseases. YouTube. https://www.youtube.com/c/everylifefoundationforrarediseases
WHY CONGRESSIONAL REPRESENTATION IS IMPORTANT
Securing representation within the Rare Disease Congressional Caucus is instrumental in amplifying the voices of rare disease advocates and driving legislative action. Engaging with caucus members allows constituents to advocate for policies that address the specific challenges faced by rare disease communities, fostering collaboration and driving meaningful change. By advocating for policies that prioritize research, treatment, and support for individuals with rare diseases, congressional representation empowers us to effect tangible improvements in healthcare policy and outcomes for all individuals affected by rare diseases.
THE SIGNIFICANCE TO RISE & RALLY
The Rare Disease Congressional Caucus holds significant importance for Rise & Rally as it aligns with our core mission of advocating for improved healthcare outcomes and access to treatments for all individuals, regardless of their medical condition. While the caucus focuses specifically on addressing the needs of rare disease communities, we recognize its broader implications for healthcare policy and advocacy. Many rare diseases share characteristics with chronic and complex conditions, such as limited treatment options, diagnostic challenges, and the need for specialized care. By advocating for policies that prioritize rare disease research, diagnosis, and treatment, the caucus contributes to advancements in medical science and healthcare innovation that benefit individuals with a wide range of medical conditions.
At Rise & Rally, we believe that the efforts of the Rare Disease Congressional Caucus extend beyond rare diseases to encompass broader healthcare issues affecting society as a whole. By championing policies that promote research funding, innovation, and access to care, the caucus plays a pivotal role in shaping the future of healthcare in the United States. Through our advocacy efforts, we seek to collaborate with the caucus and its members to address common challenges faced by individuals with chronic and complex diseases, advocating for policies that improve health outcomes, reduce healthcare disparities, and enhance quality of life for all. Together, we can work towards a healthcare system that prioritizes patient-centered care, fosters medical innovation, and ensures equitable access to treatments and support services for individuals across the spectrum of medical conditions.
HOW TO GET INVOLVED
1.
Advocate for Caucus Membership
One of the most impactful ways to support the Rare Disease Congressional Caucus is by ensuring that your representatives in both the House and Senate join the caucus. You can advocate for caucus membership by setting up meetings with your representatives, emailing them to share your story and the importance of caucus participation, and leaving behind a personalized one-pager that provides them with essential information to consider joining.2.
Support Rise & Rally
Your support of Rise & Rally through shopping at our store and participating in our initiatives enables us to continue our advocacy work on your behalf, including our efforts to engage with the Rare Disease Congressional Caucus. By supporting us, you contribute to our ability to allocate resources and personnel to advocate for policies that benefit individuals with rare diseases and other chronic and complex conditions.3.
Attend Congressional Briefings
Stay informed and engaged by watching Rare Disease Congressional Caucus briefings, where lawmakers, experts, and advocates discuss pressing policy issues related to rare diseases. Sharing information about these briefings on social media platforms can help raise awareness and educate others about the importance of caucus activities.4.
Educate and Empower Others
Take an active role in educating and empowering others to advocate for rare disease issues. Share information about the Rare Disease Congressional Caucus with your networks, encourage them to learn more about rare diseases, and empower them to reach out to their own representatives to encourage caucus membership. Together, we can amplify our voices and drive positive change for individuals with rare diseases and their families.5.
Share Personal Stories
Share your personal experiences and challenges living with a rare disease with your representatives, both in the House and Senate, and on various social media platforms such as Facebook, Twitter, and Instagram. By openly sharing your journey, you not only raise awareness about the realities of living with a rare disease but also humanize the issue for lawmakers and the broader public.6.
Stay Informed with Our Newsletter
Sign up for our newsletter to stay updated on additional ways to get involved with supporting the Rare Disease Congressional Caucus and other advocacy efforts. Receive links to briefings, important dates, and opportunities to take action, empowering you to stay engaged and informed about ongoing initiatives and developments in the rare disease community.1.
Advocate for Caucus Membership
One of the most impactful ways to support the Rare Disease Congressional Caucus is by ensuring that your representatives in both the House and Senate join the caucus. You can advocate for caucus membership by setting up meetings with your representatives, emailing them to share your story and the importance of caucus participation, and leaving behind a personalized one-pager that provides them with essential information to consider joining.2.
Support Rise & Rally
Your support of Rise & Rally through shopping at our store and participating in our initiatives enables us to continue our advocacy work on your behalf, including our efforts to engage with the Rare Disease Congressional Caucus. By supporting us, you contribute to our ability to allocate resources and personnel to advocate for policies that benefit individuals with rare diseases and other chronic and complex conditions.3.
Attend Congressional Briefings
Stay informed and engaged by watching Rare Disease Congressional Caucus briefings, where lawmakers, experts, and advocates discuss pressing policy issues related to rare diseases. Sharing information about these briefings on social media platforms can help raise awareness and educate others about the importance of caucus activities.4.
Educate and Empower Others
Take an active role in educating and empowering others to advocate for rare disease issues. Share information about the Rare Disease Congressional Caucus with your networks, encourage them to learn more about rare diseases, and empower them to reach out to their own representatives to encourage caucus membership. Together, we can amplify our voices and drive positive change for individuals with rare diseases and their families.5.
Share Personal Stories
Share your personal experiences and challenges living with a rare disease with your representatives, both in the House and Senate, and on various social media platforms such as Facebook, Twitter, and Instagram. By openly sharing your journey, you not only raise awareness about the realities of living with a rare disease but also humanize the issue for lawmakers and the broader public.6.
Stay Informed with Our Newsletter
Sign up for our newsletter to stay updated on additional ways to get involved with supporting the Rare Disease Congressional Caucus and other advocacy efforts. Receive links to briefings, important dates, and opportunities to take action, empowering you to stay engaged and informed about ongoing initiatives and developments in the rare disease community.GET THE ONE-PAGER TEMPLATE
When engaging in advocacy alongside our organization, we ask that you utilize our standardized one-pager template accessible by link via our pdf download. This ensures that policymakers and other representatives you interact with are fully aware of your affiliation with our organization, fostering cohesion and maintaining a unified voice across our advocacy efforts.
In our Canva One-Pager Template, we’ve provided a structured framework and wording to help guide you through the process of creating your own one-pager. From outlining your policy ask to crafting compelling talking points, our template is designed to help you effectively communicate your message and advocate for change with confidence!
Once you finish editing and reviewing the document, click share in the top right corner, then download, then file type choose “PDF” then hit download. After that, you can take the document and email it or print it off to give to your representative. Good luck!
