The Healthcare System Is Broken for Those with Chronic, Complex, and Rare Diseases.

We Know That Together, We Can Fix It.

Chronic, Complex And Rare Disease Patients, Caregivers, Healthcare Professionals, Medical Educators/Students, Researchers, Policymakers And Allies – It’s Time To Come Together, Transform Our Shared Struggle Into Meaningful Action, And Create Real Change

WE ARE ON A MISSION➝

WE ARE ON A MISSION↓

to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, and rare conditions and those trying to help them.

WE ARE ON A MISSION↓

to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, and rare conditions and those trying to help them.

WE EDUCATE.

WE EQUIP.

WE EMPOWER.

WHY DO WE ADVOCATE FOR THESE COMMUNITIES?

60%
of Adults In The U.S. Have At Least One Chronic Condition With 40% Having Two Or More Chronic Conditions
89%
Of Patients In A Study Of Those With A Complex Condition Reported They Experienced A Dismissive Attitude From Their Health Care Provider
80%
Of Those Affected By Autoimmune Diseases Are Women, Who Also Face A Disproportionately High Morbidity From These Conditions, Despite Them Not Being Female-specific
39%
Of Chronically Ill Respondents In A Study Cited Their Doctor’s Gaslighting As A Reason For Delays In Medical Care And Lengthy Diagnostic Journeys
95%
Of Rare Diseases Lack An Approved Treatment, Leaving Patients To Navigate A Healthcare Landscape Where Options Are Limited And Often Experimental
66%
Of U.S. Physicians Reported That Their Training Did Not Adequately Prepare Them To Educate Patients With Chronic Diseases
17%
Of Patients Reported Having To Relocate Or Are Considering Relocating To Access Care For Their Rare Disease
42%
Of People In America Have 2 Or More Chronic Conditions, And 12% Have At Least 5
71%
Of Patients Had To See Four Or More Physicians Before Receiving An Accurate Diagnosis For Their Complex Disease
50%
Of Patients And Caregivers Attributed Diagnostic Delays To A Lack Of Disease Awareness, While 42% Cited Limited Medical Specialization As A Cause
34%
Of Chronically Ill Respondents Reported In A Study As Being Treated As Unreliable Sources Of Their Symptoms During Clinical Encounters, Often Experiencing Their Illness As Dismissed Or Invalidated
77%
Of Chronically Ill Patients In A Study Reported Having Negative Interactions With Healthcare Professionals
5
Years On Average For Patients With Rare Diseases To Receive An Accurate Diagnosis, But It’s Not Uncommon For This Process To Take Anywhere From 5 To 30 Years
17%
Complex Disease Patients Reported Their Physician Displayed A Lack Of Knowledge About Their Condition

WHY DO WE ADVOCATE FOR THESE COMMUNITIES?

60%
of Adults In The U.S. Have At Least One Chronic Condition With 40% Having Two Or More Chronic Conditions
89%
Of Patients In A Study Of Those With A Complex Condition Reported they experienced a dismissive attitude from their health care provider
95%
Of Rare Diseases Lack An Approved Treatment, Leaving Patients To Navigate A Healthcare Landscape Where Options Are Limited And Often Experimental
66%
Of U.s. Physicians Reported That Their Training Did Not Adequately Prepare Them To Educate Patients With Chronic Diseases
40%
Of Patients With Complex Diseases Have At Least Three Comorbid Conditions, Complicating Their Treatment And Management
60%
Of Rare Disease Patients Received At Least One Wrong Or Inaccurate Diagnosis Prior To Receiving The Right One
49%
Of Patients With Chronic Conditions Stated That Obtaining Enough Consultation Time With Their Physicians Was The Most Difficult Aspect Of The Interaction With Their Provider
40%
Of Cases Involving Rare Diseases Have Diagnostic Errors, Leading To Delays In Appropriate Treatment And Management
57%
Of Complex Condition Patients Reported Being Treated Poorly By Their Doctors
40%
Of Rare Disease Patients Do Not Have Access To Their Recommended Medications Due To The Cost Being Too High Or Being Inaccessible Where They Are
50%
Of Complex Condition Patients Reported Being Treated Poorly By Their Doctors
40%
Of Rare Disease Patients Do Not Have Access To Their Recommended Medications Due To The Cost Being Too High Or Being Inaccessible Where They Are
70%
Of All Deaths In The United States Are Due To Chronic Disease, Making It The Leading Cause Of Death And Disability
40%
Of Patients With Complex Diseases Have At Least Three Comorbid Conditions, Complicating Their Treatment And Management
40%
Of Cases Involving Rare Diseases Have Diagnostic Errors, Leading To Delays In Appropriate Treatment And Management
29%
Of Chronic Condition Patients Report Significant Difficulty Obtaining The Exact Information They Need From Their Doctor, Undermining Trust In The Doctor–patient Relationship

JOIN US & START IN 3 EASY STEPS↓

1. SIGN UP FOR THE RALLY REPORT NEWSLETTER

2. COME CONNECT ON THE GRAM @riseandrally_

3. BEST PLACE TO START? THE ROAD TO REFORM ROADMAP

Now that you’re officially part of Rise and Rally, you might be looking at the resources on our site and wondering where to start! Don’t worry, we’ve got you covered with our 100% free – Road to Reform Roadmap program – a program we created to help guide you through all of the resources and things to know on our site in an order that makes sense! 
The program walks you through the process of getting involved in advocacy, from advocating for yourself to becoming an advocacy leader in the field! The roadmap is divided into four tiers within two sections: the Rise section (Tiers 1 & 2) and the Rally section (Tiers 3 & 4), guiding you through every step of your advocacy journey!

3. BEST PLACE TO START? THE ROAD TO REFORM ROADMAP

Now that you’re officially part of Rise and Rally, you might be looking at the resources on our site and wondering where to start! Don’t worry, we’ve got you covered with our 100% free – Road to Reform Roadmap program – a program we created to help guide you through all of the resources and things to know on our site in an order that makes sense! 
The program walks you through the process of getting involved in advocacy, from advocating for yourself to becoming an advocacy leader in the field! The roadmap is divided into four tiers within two sections: the Rise section (Tiers 1 & 2) and the Rally section (Tiers 3 & 4), guiding you through every step of your advocacy journey!

GET THE RESOURCES

LISTEN TO THE PODCAST

Here on the pod & at Rise & Rally, we recognize that the healthcare system is broken – broken for providers, broken for patients & if you’re tuning in, likely broken for you or someone you love. We don’t just want to change it; we NEED to. Together. 
That’s why we started our podcast, “All Voices” to be the place where we, as a collective group of people struggling with the current system can sit down & let all voices involved be heard so that we can truly collaborate, communicate & constructively create change in the healthcare system. 
We hope that by listening to the experiences & insights of those who share here, you’re inspired to lend your own voice to the conversation & get involved in helping to create change. After all, if we’re to truly effect change, we need to hear ALL VOICES – yours included.

LISTEN TO THE PODCAST

Here on the pod & at Rise & Rally, we recognize that the healthcare system is broken – broken for providers, broken for patients & if you’re tuning in, likely broken for you or someone you love. We don’t just want to change it; we NEED to. Together. 
That’s why we started our podcast, “All Voices” to be the place where we, as a collective group of people struggling with the current system can sit down & let all voices involved be heard so that we can truly collaborate, communicate & constructively create change in the healthcare system. 
We hope that by listening to the experiences & insights of those who share here, you’re inspired to lend your own voice to the conversation & get involved in helping to create change. After all, if we’re to truly effect change, we need to hear ALL VOICES – yours included.

READ THE BLOG

Who's Afraid of Little Old Me: Confronting Medical Gaslighting, Trauma, and the Call for Healthcare Reform
The Safe Step Act: Fixing the Fail-First Approach to Healthcare
ACA: 8 Ways to Protect the Lifeline for Chronic, Complex, and Rare Disease Patients

WATCH ON YOUTUBE

Here on our channel, you’ll find inspiring stories, educational content, webinar recordings, expert interviews, informative resources & so much more all aimed at helping to inspire, educate, equip & empower you on your advocacy journey!

WATCH ON YOUTUBE

Here on our channel, you’ll discover a wealth of content designed to support and guide you on your advocacy journey. From inspiring personal stories to in-depth educational videos, you’ll find everything from recordings of our most impactful webinars, expert interviews offering valuable insights, to a wide range of resources created with your growth and empowerment in mind.
Whether you’re new to advocacy or have years of experience, our content is carefully curated to inspire, educate, equip, and empower you every step of the way, helping you make meaningful change in your community and beyond!

TAKE ACTION

Sign Petitions

Learn about & sign our petitions to advocate for healthcare reforms and patient care.

Contact Your Reps

Contact your representatives to bring awareness to & advocate for policies.

Share Your Story

Share your personal story to raise awareness and inspire change in healthcare practices.

Request A Proclamation

Advocate for a proclamation to raise awareness and support for chronic, complex, and rare diseases.

Register To Vote

Register to vote and make your voice heard in shaping healthcare policies and reforms.

Awareness Day / Month

Participate in awareness days/months to educate & raise awareness.

Host A Fundraiser

Organize a fundraiser to support chronic, complex, and rare disease care and advocacy.

Request Monument Lighting

Request monument lighting to highlight and raise awareness for chronic, complex, and rare diseases.

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SUPPORT US & GET INVOLVED BY SHOPPING OUR STORE!

PARTNER WITH US

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