For Patients

As patients, you are at the heart of everything we do at Rise & Rally. We understand the many challenges you face and recognize the vital role you play in advocating for change. Your experiences, stories, ideas, and solutions are invaluable in shaping a better healthcare system. To support you, we’ve compiled a comprehensive array of resources, both from our organization and other trusted sources, to assist you on your medical and advocacy journeys.

We know that as patients, there are countless aspects of your health and well-being that require attention and support. From managing daily care to navigating complex healthcare systems, our resources are designed to provide the practical guidance, information, and inspiration you need. These tools aim to empower you not only in your personal medical journey but also in your advocacy efforts to drive systemic change.

Your voice is essential in creating the shifts necessary for a more equitable and effective healthcare system. By sharing your perspectives and experiences, you can influence policies, improve patient care, and inspire others to join the cause. We hope these resources help you feel supported and empowered to make a difference, both for yourself and for the broader community.

As patients, you are at the heart of everything we do at Rise & Rally. We understand the many challenges you face and recognize the vital role you play in advocating for change. Your experiences, stories, ideas, and solutions are invaluable in shaping a better healthcare system. To support you, we’ve compiled a comprehensive array of resources, both from our organization and other trusted sources, to assist you on your medical and advocacy journeys.

We know that as patients, there are countless aspects of your health and well-being that require attention and support. From managing daily care to navigating complex healthcare systems, our resources are designed to provide the practical guidance, information, and inspiration you need. These tools aim to empower you not only in your personal medical journey but also in your advocacy efforts to drive systemic change. Your voice is essential in creating the shifts necessary for a more equitable and effective healthcare system.

By sharing your perspectives and experiences, you can influence policies, improve patient care, and inspire others to join the cause. We hope these resources help you feel supported and empowered to make a difference, both for yourself and for the broader community.

OUR DOWNLOADABLE RESOURCES

At Rise & Rally, we are deeply committed to supporting patients in their healthcare journeys. That’s why we have created a variety of free downloadable resources to assist you in navigating the complexities of chronic, complex, and rare conditions. These resources cover a wide range of topics, offering education on these conditions, healthcare reform, and ways to advocate for yourself and others. We aim to provide you with the tools and information you need to manage your health and become an empowered advocate. We hope these resources support you on your journey.

Understanding Chronic, Complex, and Rare Conditions AS A Patient

Effective Communication and Self-Advocacy in Medical Appointments AS A PATIENT

Leveraging Your Stories and Experiences AS A PATIENT for Legislative Advocacy ON Chronic, Complex, and Rare Diseases

SOME OF OUR RESOURCES WHERE YOU CAN LEARN MORE & STAY IN THE KNOW

We recognize the importance of staying informed and connected in the ever-evolving landscape of chronic, complex, rare disease and healthcare reform. That’s why we’ve developed a range of resources tailored to provide patient advocates with essential knowledge, inspiration, and a supportive community. Within these resources, you’ll discover valuable insights, practical advice, inspiring narratives, and avenues for networking with others who share your experiences and advocacy for better healthcare. We invite you to explore these resources, engage with us, and connect with fellow patients as we navigate the complexities of healthcare together!

FOLLOW & ENGAGE ON SOCIALS

Connect with us on social media to stay updated on the latest developments and resources created to support patients and all advocates! By joining our online community, you can share insights, experiences, and collaborate with others who understand the challenges of living with chronic, complex, and rare diseases.

WATCH & SUBSCRIBE ON YOUTUBE

Subscribe to our YouTube channel for access to inspiring stories, educational content, webinar recordings, and expert interviews. Our videos will enhance your knowledge, provide support, and offer hope. Stay connected with our latest content to support your journey as a patient managing chronic, complex, or rare conditions.

SUBSCRIBE TO OUR NEWSLETTER

Stay informed and up-to-date with our newsletter, “The Rally Report!” Receive the latest news, upcoming events, and recent developments in chronic, complex, and rare diseases. By subscribing, you’ll stay connected to the pulse of healthcare advancements and patient support resources, helping you stay empowered and informed.

READ OUR
BLOG POSTS

Explore our blog for insightful articles, research updates, and expert advice on managing chronic illnesses, healthcare reform, and patient advocacy. Stay informed, empowered, in-the-know and connected with our regularly updated blog posts, offering you relevant and timely content to support your health and advocacy efforts.

LISTEN TO OUR
PODCAST

Tune into our podcast, “All Voices: Constructive Conversations To Create Change In Healthcare” to hear from leading experts, fellow patients, and advocates as they discuss critical topics in healthcare. Gain valuable insights and support for navigating the complexities of living with and advocating for chronic conditions and reform.

ROAD TO REFORM ROADMAP

Join the Road to Reform Program, your comprehensive guide to advocating for healthcare improvements and driving positive change! With guidance, educational resources, and community support, you’ll become an effective advocate for healthcare reform, benefiting both your personal health journey and the broader community!

BOOK US TO SPEAK

At Rise & Rally, we are dedicated to sharing knowledge and educating others on chronic, complex, and rare conditions. We firmly believe in the power of advocacy and the urgent need for healthcare reform to better serve patients and their families.

Our founder and president, along with other knowledgeable members, are available to speak to your support group, patient organization, or community gathering either in person or virtually.

Through engaging discussions, we aim to raise awareness, promote understanding, and inspire action towards positive change in healthcare. Contact us to book a speaker and join us in our mission to drive impactful reform and support those affected by these challenging conditions.

BOOK US TO SPEAK

At Rise & Rally, we are dedicated to sharing knowledge and educating others on chronic, complex, and rare conditions. We firmly believe in the power of advocacy and the urgent need for healthcare reform to better serve patients and their families.

Our founder and president, along with other knowledgeable members, are available to speak to your support group, patient organization, or community gathering either in person or virtually.

Through engaging discussions, we aim to raise awareness, promote understanding, and inspire action towards positive change in healthcare. Contact us to book a speaker and join us in our mission to drive impactful reform and support those affected by these challenging conditions.

OUTSIDE RESOURCES

Our goal is to equip you with as many tools and sources of educational support as possible, ensuring you have access to the information and assistance you need. We know that there are incredible organizations that can help do this so we wanted to include resources from various reputable organizations that are able to provide invaluable resources we believe can further help you on your educational and advocacy journey. By compiling these diverse resources, we hope that patients can find and get access to what they need to manage their conditions and advocate for themselves and others.

**We also want to note that we are not affiliated with these organizations and are only sharing them as a resource.

PATIENT ADVOCATE FOUNDATION

The Patient Advocate Foundation provides support and resources for patients with chronic, complex, and rare conditions. Here, you can access case management services, financial aid resources, and educational materials to help you manage your healthcare needs. PAF helps patients overcome barriers to accessing care.

Patients Rising

Patients Rising offers educational resources and advocacy tools for patients with chronic and rare diseases. Here, you can access patient stories, advocacy training, and policy updates to help you navigate the healthcare system and advocate for better care. Patients Rising supports patients in becoming strong advocates for healthcare reform.

The National Health Council

The National Health Council provides patients with resources to understand and engage in healthcare policy. Here, you can access policy briefs, patient stories, and advocacy tools to support your efforts in promoting healthcare reform. NHC helps patients become informed advocates for better healthcare policies.

THE MIGHTY

The Mighty provides a platform for patients with chronic and rare diseases to share their stories and connect with others. Here, you can find articles, personal stories, and a supportive community to help you feel less alone in your journey. The Mighty empowers patients through shared experiences and peer support.

HEALTHWELL

HealthWell Foundation offers financial assistance to patients with chronic and rare diseases. Here, you can find information on grants, co-pay assistance programs, and other financial aid resources to help manage your healthcare costs. HealthWell Foundation helps patients afford critical medical treatments.

MYHEALTHTEAM

MyHealthTeams provides social networks for patients with specific chronic conditions. Here, you can connect with others who share your condition, exchange information, and find support from a community that understands your challenges. MyHealthTeams helps patients build a supportive community.

The National Organization For Rare Disorders

The National Organization For Rare Diseases provides patients with information, advocacy tools, and support for rare diseases. Here, you can find patient stories, disease information, and resources for navigating the healthcare system. NORD helps ensure that patients have access to necessary resources and support.

THE
COMMONWEALTH FUND

The Commonwealth Fund is a trusted source for healthcare research, policy analysis, and advocacy initiatives. Here you can stay informed with their extensive reports and publications covering the healthcare system, policy issues and engage with their resources to learn more and drive positive change in healthcare delivery and financing.

INSTITUTE FOR HEALTHCARE MPROVEMENT

The Institute for Healthcare Improvement is a trusted source for healthcare quality improvement resources and tools. Access their extensive library of articles, case studies, and improvement guides to enhance your knowledge and skills. Here you can stay informed and learn about the latest advancements.

Global Genes

Global Genes offers educational materials, advocacy resources, and support networks for patients with rare diseases. Here, you can access toolkits, webinars, and community connections to help manage your condition. Global Genes empowers patients to become advocates for themselves and their communities.

GARD

GARD provides comprehensive information on genetic and rare diseases. Here, you can find reliable data, educational resource, patient support groups, and resources to help you understand your condition and treatment options. GARD ensures that patients have access to up-to-date and accurate information.

ORPHANET

Orphanet offers an extensive database of information on rare diseases and orphan drugs. Here, you can find disease descriptions, clinical guidelines, educational resources and information on ongoing research and trials. Orphanet aims to improve the diagnosis, care, and treatment of patients with rare diseases.

RARE PATIENT VOICE

Rare Patient Voice connects patients with research opportunities and surveys to share their experiences. Here, you can participate in research studies and contribute to the understanding of rare diseases. Rare Patient Voice empowers patients to contribute to research that can lead to better treatments and cures while also making some money!

PATIENTS LIKE ME

PatientsLikeMe is an online community where patients can connect with others who share their chronic, complex, or rare conditions. Here, you can share your experiences, track your symptoms, learn about your condition, get access to resources and access valuable insights from others living with similar health challenges.

PSYCHOLOGY TODAY

Psychology Today offers a comprehensive directory of therapists specializing in chronic illness, providing patients with access to mental health professionals who understand the unique challenges associated with managing long-term health conditions. Their platform also offers articles and resources to support patients.

NAMI

National Alliance On Mental Health provides support and resources for patients with chronic, complex, and rare mental health conditions. Here, you can find educational materials, support groups, and advocacy tools to help manage your mental health. NAMI is dedicated to building better lives for the millions affected by mental illness.

rareconnect

RareConnect offers a safe, online platform for patients with rare diseases to connect, share experiences, and find information. Here, you can join condition-specific communities, participate in discussions, and access resources on rare diseases. RareConnect helps patients find support and information in a global community.

healthunlocked

HealthUnlocked is an online health network where patients can join condition-specific communities, share experiences, and find information. Here, you can connect with others facing similar health challenges, access health information, and participate in discussions. HealthUnlocked fosters community and support for patients.

Chronic Care Policy Alliance

Chronic Care Policy Alliance advocates for policy changes to improve care for chronic disease patients. Here, you can access advocacy resources, educational materials, policy updates, and tools to support your advocacy efforts. Chronic Care Policy Alliance works to shape policies that improve patient care and outcomes.

undiagnosed diseases network

UDN helps patients with undiagnosed conditions find answers through collaborative research and clinical care. Here, you can learn about the network’s diagnostic process and how to participate in their programs if you are living undiagnosed. UDN aims to provide diagnoses and treatments for patients with undiagnosed diseases.

EVERYLIFE FOUNDATION

EveryLife Foundation advocates for rare disease patients and offers resources to support their journey. Here, you can access advocacy training, educational materials, legislative updates, and research funding opportunities. EveryLife Foundation works to accelerate biotech innovation to treat and cure rare diseases.

Lotsa

Lotsa Helping Hands provides patients with a platform to create and join care communities that offer support during times of need. Here, you can organize and coordinate help from family, friends, and volunteers for tasks such as meal delivery, transportation, and household chores. It equips patients to be able to manage their care more effectively.

cover my meds

CoverMyMeds helps patients navigate the complexities of prior authorization for medications, ensuring that prescriptions are processed efficiently and without unnecessary delays. Here, you can find tools, resources and support to understand insurance requirements and get the medications you need.

NEEDYMEDS

NeedyMeds is a valuable resource providing patients with information on prescription assistance programs, drug discount coupons, and free or low-cost clinics, helping individuals with chronic, complex and rare conditions more easily get access to affordable and more easily accessible healthcare options and medications.

gofundme

GoFundMe provides patients with a platform to raise funds for medical expenses, treatments, and related costs through crowdfunding. Here, you can share your story, reach out to a wider community for financial support, and manage donations. GoFundMe offers a vital lifeline for patients facing significant healthcare expenses.

rx saver

RxSaver helps patients find the best prices for their prescriptions, making medications more affordable and accessible. Here, you can compare drug prices at different pharmacies and get coupons for discounts. RxSaver empowers patients to save money on their medications without sacrificing quality.

caringbridge

CaringBridge offers patients a space to share their health journey, updates, and receive support from loved ones through personalized websites. Here, you can communicate with friends and family, share updates on your condition, and receive messages of encouragement. CaringBridge fosters a supportive community around patients.

findhelp

FindHelp.com provides a comprehensive directory of social services and assistance programs for patients and their families. Here, you can access resources for food, housing, healthcare, and financial support, tailored to your specific needs and location. FindHelp.com connects patients to vital community resources.

my carelinq

MyCareLinq offers a platform for patients to manage their health records, appointments, and communication with healthcare providers. Here, you can access tools to streamline your healthcare experience, ensuring all your medical information and communication is organized and easily accessible.

accessia health

Accessia Health provides patients with financial assistance and support services to manage chronic, rare, and complex health conditions. Here, you can find resources for insurance copayments, premiums, travel assistance, and more. Accessia Health is dedicated to reducing the financial burden of healthcare.

Medical Board

The Federation of State Medical Boards (FSMB) provides resources and support for patients needing to report medical misconduct or malpractice. Here, you can access information on how to file complaints, verify physician credentials, and understand your rights as a patient. FSMB helps ensure accountability and maintains the quality of healthcare.

AARP

AARP offers a wealth of resources for patients, particularly those aged 50 and older, focusing on health, wellness, and advocacy. Here, you can find important form templates for directives and medical care, information on managing chronic conditions, accessing healthcare services, and advocating for better healthcare policies.

medisafe

Medisafe is a comprehensive medication management app designed to help patients organize and track their medications effectively. With features like pill reminders, medication adherence tracking, and health insights, Medisafe empowers patients to stay on top of their improve medication adherence.

Symple

Symple is a symptom tracker app that allows patients to monitor and manage their health symptoms easily. With Symple, users can log symptoms, track their frequency and generate reports to share with providers. This patients to gain insights into their health patterns, identify triggers, and make informed decisions about their care.

pubmed

PubMed provides patients with access to a vast database of biomedical literature, including research articles and clinical studies on chronic, complex, and rare conditions. This resource helps patients stay informed about the latest scientific advancements and treatment options, empowering them to make decisions about their healthcare.

JAMA

JAMA Network provides healthcare professionals with access to a wide range of peer-reviewed medical journals, including The Journal of the American Medical Association, offering valuable research articles, clinical studies, and evidence-based content to support informed decision-making and enhance patient care.

clinical
trials

ClinicalTrials.gov is a valuable resource for patients seeking information about clinical research studies worldwide. This comprehensive database provides detailed information about clinical trials, including study objectives, eligibility criteria, locations, and contact information so that you can see if you qualify and apply!

National
Advocates

Greater National Advocates (GNA) is a nonprofit organization dedicated to empowering patients to become informed advocates for their health and well-being. Through educational resources and advocacy training GNA equips patients with the knowledge and tools they need to navigate the healthcare system effectively.

kaiser family foundation

The Kaiser Family Foundation offers non-partisan insights into healthcare policy. Patients can access research reports, policy briefs, educational materials, resources and data analysis, aiding their understanding of healthcare complexities, how to overcome them and empowering them to advocate for their needs.

RESOURCES & WAYS TO HELP YOU GET INVOLVED WITH RISE & RALLY

There are countless opportunities for patients to actively engage with our organization and contribute to our shared vision of a more equitable and compassionate healthcare system! Whether through volunteering, advocacy efforts, or knowledge-sharing initiatives, your involvement is crucial in driving meaningful change. Explore our range of involvement opportunities and discover how you can play a pivotal role in shaping the future of healthcare!

ROAD TO REFORM Roadmap

Start your advocacy journey with our Road to Reform Program! This is the BEST place to begin, as we guide you through every step of getting involved with advocacy. Our program makes it easy and accessible, empowering you to make a difference! Join us to learn how you can influence policy and create change!

READ & SIGN
PETITIONS

You can read, sign, and share petitions related to healthcare policies, research funding, and patient rights for issues we are advocating for. By adding your voice to these campaigns, you can help drive change and bring attention to important issues affecting the communities we serve.

CONTACT YOUR REPRESENTATIVES

You can contact your local, state, and federal representatives to discuss issues important to you. By sharing your personal experiences and the challenges you face, you can advocate for policies and changes that better support your needs and the needs of your others, influencing legislative decisions.

REQUEST A PROCLAMATION

You can request proclamations from local or state governments to designate awareness days or months for specific conditions. This formal recognition can help raise public awareness and support for chronic, complex, and rare diseases, as well as healthcare reform efforts, driving community engagement and recognition!

MONUMENT
LIGHTING

You can participate in monument lighting advocacy to raise awareness for chronic, complex and rare disease advocacy and healthcare reform awareness day/month. By organizing an event, you can help bring visibility and support to our cause, fostering community awareness and understanding on a larger scale.

HOST A
FUNDRAISER

You can host a fundraiser to support Rise & Rally and what we are doing to raise awareness and change the education around chronic, complex and rare conditions and the need for healthcare reform. Whether through community events, online campaigns, or social media drives, fundraisers can really make a difference.

SHARE YOUR STORY WITH US

Share your journey as a patient and your experiences with chronic, complex, or rare diseases. Your story can provide valuable insights and encouragement to others in our community. By sharing your story, you contribute to a collective voice that can drive change and raise awareness about the challenges patients face.

AWARENESS
DAY/MONTH

You can get involved in celebrating awareness days or months dedicated to specific conditions and our chronic, complex, and rare disease advocacy and healthcare reform efforts. By participating in events, sharing information, and wearing awareness colors, you can help increase visibility and understanding of these conditions!

SHOP, GET & WEAR OUR APPAREL

Express your support for us and our mission by browsing our selection of Rise & Rally apparel! From comfortable tees to cozy hoodies/crewnecks, hats and more – our merchandise allows you to wear your advocacy proudly. Every purchase directly contributes 100% of proceeds to achieving our goals and mission here at Rise & Rally.

COME ATTEND
AN EVENT

Participate in our events to engage directly with experts, educators, and students who are passionate about healthcare reform and patient advocacy. These events offer a plethora of opportunities for professional development, networking, and gaining new insights into advocating for chronic, complex, and rare conditions.

BECOME AN AMBASSADOR

Take your involvement with Rise & Rally to the next level by becoming an ambassador! As part of “The Ralliers,” our ambassador program, you’ll have the opportunity to raise awareness, advocate for solutions, represent our communities/mission and foster connections for those seeking involvement in their state.

BECOME A
VOLUNTEER

Join our dedicated team of volunteers and lend your time and skills to support advocate for positive change in the healthcare system. As part of “The Risers” volunteer program, you’ll have the opportunity to make a meaningful impact, help support us in our mission and connect with others who share your passion for creating change!