Who We Are & What We Do

who we are

“Rise & Rally: Chronic, Complex And Rare Disease Advocacy And Healthcare Reform” is a 501(c)(3) non-profit organization on a mission to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, or rare conditions and the physicians who are trying to help them.

Through targeted initiatives such as patient advocacy, community engagement, the “All Voices” podcast, the Rise & Rally YouTube Channel, our curated collection of free resources, the Road To Reform Program, as well as through collaboration and strategic partnerships, we equip patients, caregivers, allies, medical educators & students, researchers, healthcare providers, and policymakers with the tools and resources needed to drive the systemic change essential for these communities.

In our efforts to create lasting change, we acknowledge the immediate challenges faced by patients, providers, and caregivers within the current healthcare system and strive to provide practical solutions and support to navigate these obstacles effectively. That’s why we work to also advocate for policies to be enacted now to make the care, management and treatment of those in these communities more accessible, affordable and practical.

It’s our hope that by advocating for change in the short and long term, we will be able to create a healthcare system that truly serves all involved – especially those in these communities who use it most. We believe that together we can rise, rally, reform, and really make a difference for those in our community & healthcare system!

who we serve

At Rise & Rally, what we do and our approach to chronic, complex, and rare disease advocacy and healthcare reform centers around three pillars: Educate, Equip, and Empower. We believe that by providing knowledge, resources, and support, individuals can effectively advocate for themselves and others, driving meaningful change in healthcare.

Through our dedication to these pillars, we strive to create a community that feels educated, equipped and empowered to navigate healthcare systems, advocate for policy reforms, and improve the healthcare system for themselves and all those living with, caring for, treating, teaching on and researching chronic, complex and rare conditions.

PATIENTS

CAREGIVERS

ALLIES

HEALTHCARE PROFESSIONALS

RESEARCHERS

MEDICAL EDUCATORS & STUDENT

POLICYMAKERS

ADVOCATES

WHAT WE DO

At Rise & Rally, what we do and our approach to chronic, complex, and rare disease advocacy and healthcare reform centers around three pillars: Educate, Equip, and Empower. We believe that by providing knowledge, resources, and support, individuals can effectively advocate for themselves and others, driving meaningful change in healthcare.

Through our dedication to these pillars, we strive to create a community that feels educated, equipped and empowered to navigate healthcare systems, advocate for policy reforms, and improve the healthcare system for themselves and all those living with, caring for, treating, teaching on and researching chronic, complex and rare conditions.

01. educate

In order to identify and address the systemic issues impacting chronic, complex and rare disease communities within healthcare, we must first achieve a deep understanding of these problems. This understanding encompasses not only recognizing the existence of barriers but also comprehending their root causes and the wide-ranging impacts they have on individuals with chronic, complex, and rare diseases. By educating ourselves and others, we foster a culture of empathy and awareness, which is essential for driving meaningful change.

With that being said, it’s not enough to simply know what the issues are; we must also understand how to effectively address and resolve them. This involves learning about successful advocacy strategies, healthcare policies, and practical solutions that can be implemented.

That’s why we have intentionally provided these resources to help equip you with the knowledge and skills needed to advocate for yourself and others, ensuring that everyone has the tools to contribute to systemic change. Through education, we empower our community to move from awareness to action, paving the way for a healthcare system that truly serves all.

Below, you’ll find a variety of resources to help you learn more about chronic, complex and rare conditions, healthcare reform and the systems that can help us create change!

ROAD TO REFORM PROGRAM

GLOSSARY OF COMMON TERMS

CHRONIC, COMPLEX & RARE FACTS & STATS

LOCAL LEGSLATIVE PROCESS

STATE LEGSLATIVE PROCESS

FEDERAL LEGISLATIVE PROCESS

HEALTHCARE REFORM

02. equip

While knowing and understanding through education is vital, we think that it’s equally important to go beyond just providing education and going on to equip you to take actionable steps towards advocating for change. We are committed to ensuring that our community is not only informed but also prepared and confident to engage in effective advocacy so our goal is to provide the necessary tools, resources, and skills that you need to navigate the complexities of healthcare advocacy and drive the systemic change you want to see!

We strive to empower our community by offering various avenues for skill-building and practical application, ensuring that you are not only aware of the issues, but are also equipped to address them effectively.

Below, you can find specific resources designed to equip you for effective advocacy!

PATIENT RESOURCES

CAREGIVER RESOURCES

ALLY RESOURCES

HEALTHCARE PROFESSIONAL RESOURCES

MEDICAL EDUCATOR & STUDENT RESOURCES

RESEARCHER
RESOURCES

POLICYMAKER RESOURCES

VOTING RESOURCES

SIGN OUR PETITIONS

READ PEOPLE'S STORIES

HOST A FUNDRAISER

CONTACT YOUR REPS

CREATE A ONE-PAGER

AWARENESS DAY/MONTH

EXPLORE THE POLICY MAP

REQUEST A PROCLAMATION

MONUMENT
LIGHTING

CREATE A LEGISLATIVE BILL

RARE CONGRESSIONAL CAUCUS

MAINSTREAM MEDIA TOOLKIT

RARE DISEASE ADVISORY COUNCIL

03. EMPOWER

While education and equipping are crucial for laying the groundwork, real change comes from taking action, which is why our final pillar is empowerment! We understand that to create lasting impact, you have to be empowered to apply your knowledge and utilize the resources provided to you to take those steps to create change!

To us, empowerment means giving you the confidence, encouragement, and opportunities you need to become proactive advocates which is why we focus on building a strong, supportive community where individuals can share their experiences, inspire each other, and collectively work towards taking the action on improving the care of those with chronic, complex and rare conditions and healthcare reform.

By empowering you and our community, we turn education and resources into powerful tools for advocacy, driving the systemic changes needed to improve care for those with chronic, complex, and rare conditions and we are SO excited to have you join us!

Below, you’ll find a variety of resources to help you feel connected and empowered to take the action that will help create change!

SUBSCRIBE TO OUR NEWSLETTER

WATCH & SUBSCRIBE ON YOUTUBE

LISTEN TO OUR
PODCAST

ATEND AN EVENT

SHOP OUR STORE

READ THE BLOG

SHARE YOUR
STORY

BECOME AN AMBASSADOR

BECOME A
VOLUNTEER

WHY WE DO WHAT WE DO

Our why behind what we do is rooted in the belief that all people deserve to a healthcare system that helps them.

Our why is deeply personal because it’s about YOU and every individual who has ever faced barriers in accessing quality healthcare, every caregiver who has struggled to navigate a complex system, every healthcare professional who has felt constrained by bureaucratic red tape, every researcher who has the knowledge and passion but not the funds, every medical educator and student who wants to teach and learn about these topics but does not have the resources and every policymaker that wants to help but doesn’t know how.

Our why is so important because it’s about creating a healthcare system that truly helps us heal, not one that stresses us out as a society and makes us all sicker. We refuse to accept a status quo where individuals are left to navigate a maze of obstacles just to receive quality care.

Our why is fueled by the stories of resilience and strength we witness every day – the unwavering determination of patients fighting against the odds, the tireless dedication of caregivers advocating for their loved ones, the love and support from allies, the passionate commitment of healthcare professionals striving to make a difference, the determination of the researchers to find answers, the passion of medical educators and students to be the best they can be, and the support of the policymakers who are able to make these changes happen.

We believe that by standing together and advocating for change, specifically for those impacted by chronic, complex and rare conditions, and in the healthcare system as a whole, we believe we can make healthcare, true health care for all. We hope you will join us!