Jocelyn Cooper, RDDC Program Manager

Vasculitis is not just one condition, but rather a group of nearly 20 rare diseases that cause inflammation of the blood vessels. When blood vessels are damaged, blood flow can be restricted, leading to serious complications that affect vital organs such as the heart, lungs, kidneys, and brain. For patients, the symptoms are often unpredictable and debilitating: severe headaches, nerve pain, skin ulcers, fatigue, and unexplained weight loss are just a few of the challenges. But for many living with vasculitis, the disease itself is only part of the struggle. The larger battle often lies in navigating a healthcare system filled with barriers, including limited access to specialists, longer waits to schedule appointments, financial strain, and systemic bias.

To address these urgent issues, the Rare Disease Diversity Coalition (RDDC) and the Vasculitis Foundation partnered to create the report, Patient Recommendations for People Living with Vasculitis Report. Built on the voices and lived experiences of patients, the report shines a light on inequities in vasculitis care and offers patient-driven recommendations for meaningful change.

The Hidden Inequities in Vasculitis Care

The report documents what patients have long known: vasculitis care is unequal, and inequities directly shape health outcomes. Patients report waiting three months or more to see a specialist - an agonizing delay for a progressive disease where time is so critical. Rural communities face especially steep challenges, as geographic barriers and restrictive insurance policies often mean traveling hours across state lines just to reach a knowledgeable provider.

For others, stereotypes and bias influence care. Race, gender, income, where one lives, or even sexual orientation can impact whether a patient feels believed when describing pain or symptoms. The cost of treatment is another overwhelming barrier. With the average American household holding less than $1,000 in savings, high out-of-pocket expenses for vasculitis medications (sometimes thousands of dollars per year) can make lifesaving therapies inaccessible, even in cases where they’re available. These inequities make one truth painfully clear: where you live, what you look like, and how much you earn can determine whether you receive timely and effective treatment for vasculitis.

Why Health Equity Must Be at the Center of Rare Disease Care & Support

Health equity means more than fairness; it means ensuring every patient has the opportunity to access quality care regardless of background. In the vasculitis community, patients describe equity as being able to see a trusted provider virtually without state-by-state restrictions. It looks like culturally competent, trauma-informed care in which providers truly listen and treat each person as an individual, not a stereotype. From a more holistic perspective, it means having peer support groups, mental health services, and caregiver resources to help manage the emotional weight of living with a rare disease. And it also requires policy reform that removes insurance barriers, expands Medicaid access, and ensures that cost is never the reason someone goes without treatment or support services.

What Patients Are Asking For

The Patient Recommendations for People Living with Vasculitis Report highlights clear recommendations from patients themselves. They implore medical students and healthcare providers to receive more education on vasculitis, so that primary care doctors, neurologists, and rheumatologists can recognize its warning signs earlier. Patients need systems that empower advocacy through multilingual resources, peer-to-peer networks, and second opinions without retaliation or stigma. And they are calling for system-level reforms that make care more affordable and accessible, from protecting telehealth reimbursement to improving the sharing of medical records across providers.

How to Join the Movement

The call for equity in vasculitis care is a call to action. Whether you are a patient, policymaker, or provider, everyone has a role to play. You can help amplify this work by sharing the full Patient Recommendations for People Living with Vasculitis Report  and the accompanying Vasculitis Social Media Toolkit. Stand with the Rare Disease Diversity Coalition (RDDC) by raising awareness within your network using the sample educational posts and suggested hashtags.

Vasculitis may be rare, but the barriers patients face are all too familiar. By listening to patient voices and taking meaningful steps to address inequities, we can create a healthcare system that truly delivers on the promise of equity - a system where every patient has the opportunity to live well, regardless of their identity.

On behalf of the Black Women’s Health Imperative and RDDC, we extend our deepest thanks to Amgen for their partnership and continued support in advancing groundbreaking initiatives that bring equity to rare disease care.