Our Vision
A future where rare-disease patients thrive through strong community support, public-health collaboration, and research-informed systems that improve diagnosis, treatment, and quality of life.
Core Focus Areas
1. Education & Youth Engagement
- School presentations, curriculum support, and youth awareness programs.
- Anti-stigma initiatives and youth leadership opportunities.
2. Community Outreach & Awareness
- Rare Disease Day campaigns and statewide events.
- Community trainings, resource fairs, and public presentations.
3. Research & Data Partnerships
- Collaboration with state agencies, universities, and public-health departments.
- Support for community surveys, data analysis, needs assessments, and research dissemination.
4. Resource Navigation & Full-Spectrum Support
- Guidance on medical, mental-health, financial, and community services.
- Support for families navigating complex care and multi-system challenges.
5. Policy & Systems Advocacy
- Partnership with state entities to inform policy improvements.
Advocacy for equitable access, early diagnosis, and reduced barriers to care.
Who We Serve
- Individuals and families living with rare or complex medical conditions
- Students, educators, and school communities
- Healthcare providers and public-health professionals
- Nonprofit and government partners
- Underserved populations experiencing disparities in access to care
Our Partnership Approach
We collaborate through:
- State & city agency partnerships
- School district & youth program engagement
- Healthcare and university research initiatives
- Nonprofit and coalition-based collaboration
- Joint outreach, training, and data-sharing projects
Our focus is relationship-driven, evidence-informed, and aligned with public-health priorities
How to Partner With Us
We welcome opportunities to work together on:
- Research and data collection initiatives
- Community education and awareness campaigns
- School programs and curriculum integration
- Public-health projects and needs assessments
- Resource-building and service coordination
- Policy and systems-change efforts
Get Involved
Upcoming events hosted by nonprofit affiliates.