First-of-Its-Kind Decision Tree Gives ANCA Vasculitis Community a Map Through a System Built Without Them in Mind

Navigating a rare disease is tough. This tool helps people find their way through a system not built for them — for patients, care partners, and physicians.

GRAND RAPIDS, MI, UNITED STATES, September 2, 2026 /EINPresswire.com/ — A new diagnosis of ANCA vasculitis usually arrives the same way: fast, frightening, and with no map. Most people have never heard of the disease before it lands on them, many have lived a healthy life and they suddenly find themselves in a healthcare system that offers little to help them find their footing.

Eosinophilic & Rare Disease Cooperative (ERDC) convened a comprehensive ecosystem-based steering committee to develop a tool that leaves people less alone. Today, ERDC announces the launch of the ANCA Vasculitis Decision Tree, the first patient-facing navigation tool of its kind available to the ANCA vasculitis community available at www.rarediseasedecisiontree.org.

The Decision Tree is a free, interactive computer-based tool (or downloadable map) developed with rheumatologists, nephrologists, pulmonologists, pharmacists, primary care clinicians, insurance billing specialists, care partners, and patients themselves. It helps people, regardless of where they are in their disease journey.

The Decision Tree walks a person through the questions that otherwise go unanswered: When does a new symptom mean urgent care instead of watching and waiting? Which specialist owns which piece of the disease? How does someone build a care team when their diagnosis is one most clinicians have never treated? For a disease this rare, those answers have never before existed in one place, built for the person living it.

Specifically, the tool helps locate physicians, ensure baseline testing, pull a care team together, assess quality of life and explore treatment options, order a free disease specific HEAT Kit (Hospital Emergency Advocacy & Treatment Kit), and ensure proper ongoing monitoring. After completing the tool, the user is able to print a copy of all of the materials, including outstanding labs and tests to bring with them to their doctor.

The Decision Tree is grounded in real patient experience. It will be shared at will be the subject of its own Interactive Scientific Session ACR Convergence 2026 in Orlando, Sunday, November 8.

ERDC is making the Decision Tree freely available and unbranded to clinics, health systems, and care teams to integrate directly into routine care — no cost, no license, no barrier between the tool and the person who needs it.

ANCA vasculitis is one of six rare disease communities served by ERDC, a patient- and care-partner-run nonprofit reaching more than 120,000 people. ERDC’s mission is built on the belief: people living with rare disease deserve access to care and treatment.

To try the Decision Tree, visit www.rarediseasedecisiontree.org or find it at EosinophilRareDisease.org.
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Eosinophilic & Rare Disease Cooperative (ERDC) is a patient and care partner-run nonprofit serving people with ANCA-associated vasculitis (GPA/MPA, EGPA), IgG4-RD, Myasthenia Gravis, Hypereosinophilic Syndrome, and NMOSD, reaching more than 120,000 people across these communities.
Resources available:
• HEAT Kits — Disease-specific kits for patients to use in healthcare settings. Kits include treatment history, labs, monitoring parameters, a medical snapshot, guidelines, medical history, infusion guidance, and more. Usable with any provider, it builds patient confidence, and transfers information quickly.
• Rare Disease Decision Trees — Visual, step-by-step guides through diagnosis, emergency care, and care-team building, developed with disease-specific clinical partners, patients, care partners, medical billing, pharmacists and the disease ecosystem. Currently available for ANCA Vasculitis only. IgG4-RD coming early 2027.
• Livestream education – Live sessions on treatment access, insurance navigation, and Medicare, and more archived so anyone can revisit them.
• Rare Candor podcast — Unscripted conversations with clinicians, advocates, care partners, biotech leaders, and people living with rare disease, on treatment, policy, and access (Spotify and Apple).
• Survey data — Original ethnographic surveys to understand patient experience and barriers to care, including our Medical Debt in Rare Disease Survey.
• Public policy advocacy — Legislative engagement and education to improve systemic access to quality care and treatment.
Our work is not seeking a cure. We work for access to the right treatment at the right time, every time.

Sarah Jones
Eosinophilic & Rare Disease Cooperative
5204813277
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