Project Alive Launches "Hunter Health"

FOR IMMEDIATE RELEASE

Project Alive Launches “Hunter Health” — Comprehensive Care-Coordination Program for Families Living with Hunter Syndrome

October 23,2025 — Project Alive, a national nonprofit dedicated to supporting families affected by an ultra-rare disease known as Hunter syndrome or MPS II, today announces the launch of Hunter Health, a new care-coordination program designed to empower families living with Hunter syndrome (MPS II). The program is now open for enrollment.

Hunter Health connects each participating family with a dedicated care-coordinator who offers personalized support: organizing medical and therapy appointments, tracking care plans, navigating insurance and appeals, and connecting to specialists and relevant resources. By reducing the logistics and administrative burdens of managing complex care, Hunter Health allows families to focus on what matters most — quality time together and improved outcomes.

Key Features of Hunter Health:

• Care Coordination & Scheduling Support: Coordinators assist families with scheduling, reminders, follow-up calls, and pre-visit preparation to ensure no detail is overlooked.
• Insurance & Advocacy Assistance: Navigating specialist referrals, prior authorizations, appeals and medical billing can be overwhelming; Hunter Health strives to lighten that load.
• Specialist & Resource Navigation: Finding trusted clinicians, therapy providers, and community resources specifically knowledgeable about Hunter syndrome is a core part of the program.
• Family-Centered Emotional & Peer Support: Understanding that the impact of Hunter syndrome extends beyond medical care, the program offers emotional support, peer-connections, and a sense of community.
• Upcoming Hunter Health Portal (Coming Soon): A secure digital hub where families can manage appointments, store documents, and communicate with their coordinator.

Why It Matters
Families managing Hunter syndrome face complicated medical, therapy, educational and advocacy needs—often requiring coordination across multiple providers, insurers and settings. By offering a single point of coordination and support, Hunter Health simplifies this process and provides a stable foundation for better care. Outcomes families can expect include reduced stress and overwhelm, improved appointment adherence, stronger communication across care teams, and greater access to specialists and resources.

Who Should Participate
The program is open to families caring for a child or adult diagnosed with Hunter syndrome who need support managing medical appointments, therapies, resources and care teams.

How to Get Started
Families interested in participating may submit an application via Project Alive’s website. A Family Support Coordinator will follow up to begin the intake process, care-plan creation, and regular check-ins. From enrollment through ongoing support, Hunter Health is designed to offer long-term partnership.

Learn more about the Hunter Health program here: https://projectalive.org/programs/hunter-health

About Project Alive
Project Alive is a 501(c)(3) nonprofit organization committed to improving the lives of children and families impacted by rare diseases. Through advocacy, education, support programs and community building, Project Alive works toward a future in which no family faces isolation or confusion when managing rare disease care.