ERDC launches first patient-facing ANCA vasculitis decision tree

Eosinophilic & Rare Disease Cooperative has launched a free, interactive navigation tool for people with ANCA vasculitis, a rare disease that often leaves patients without clear care guidance. The decision tree is designed to help patients, care partners and clinicians coordinate testing, specialists, treatment options and ongoing monitoring.

Why it matters: - ANCA vasculitis is rare enough that many patients enter diagnosis without a roadmap. - The new decision tree is designed to help patients and care teams make faster, clearer decisions about symptoms, testing, specialist care and monitoring. - ERDC is offering the tool free and unbranded, which could make it easier for clinics and health systems to adopt it in routine care.

What happened: - Eosinophilic & Rare Disease Cooperative announced the launch of the ANCA Vasculitis Decision Tree on Sept. 2, 2026. - ERDC calls the tool the first patient-facing navigation resource of its kind for the ANCA vasculitis community. - The tool is available at rarediseasedecisiontree.org and at EosinophilRareDisease.org. - ERDC plans to present the decision tree in an Interactive Scientific Session at ACR Convergence 2026 in Orlando on Sunday, Nov. 8.

The details: - The decision tree is a free, interactive computer-based tool and downloadable map. - ERDC developed it with rheumatologists, nephrologists, pulmonologists, pharmacists, primary care clinicians, insurance billing specialists, care partners and patients. - The tool guides users through questions that often come up after diagnosis, including when a new symptom needs urgent care and which specialist handles which part of the disease. - The tool helps users locate physicians, confirm baseline testing, assemble a care team, assess quality of life, explore treatment options, order a free HEAT Kit and track ongoing monitoring. - After completing the tool, users can print the materials, including outstanding labs and tests, to bring to a doctor visit. - ERDC says the tool is grounded in real patient experience. - ERDC is making the decision tree freely available and unbranded to clinics, health systems and care teams.

Between the lines: - The launch reflects a broader push to build rare-disease tools around the patient experience, not just clinical workflows. - ERDC is positioning navigation, access and coordination as the core unmet need, rather than cure development. - The group serves six rare disease communities and says its work reaches more than 120,000 people. - ERDC also offers HEAT Kits, livestream education, the Rare Candor podcast, survey data and public policy advocacy.

What's next: - ERDC says IgG4-RD will be added to its Rare Disease Decision Trees in early 2027. - More clinics and care teams may be able to integrate the ANCA vasculitis tool into routine care because it is free and unbranded. - Patients can try the tool now at rarediseasedecisiontree.org.

The bottom line: - ERDC is trying to give people with ANCA vasculitis a clearer path through diagnosis and care in a system that often leaves them to navigate alone.