Program Overview
The You Matter Complex Care Navigation Program provides patient-led advocacy and navigation for individuals living with rare disease and co-occurring mental health challenges who are experiencing delays, dismissal, or fragmentation in care.
Need
Patients with rare and complex conditions frequently fall outside the scope of diagnosis-specific organizations and are left to self-advocate while unwell. When mental health needs intersect with medical complexity, barriers multiply.
Program Activities
- Individual advocacy and navigation
- Coordination across medical and mental health providers
- Trauma-informed support during decision-making
- Education on systems, rights, and next steps
Outcomes
- Improved patient understanding of care options
- Reduced delays and barriers (self-reported)
- Increased patient confidence navigating systems
- Reduced crisis escalation related to care confusion
Why This Matters
This program fills a critical gap by supporting patients who do not fit neatly into existing systems—turning funding into immediate, human-centered impact.