Hunter Health

Hunter Health is Project Alive’s care coordination program designed to support families affected by Hunter syndrome. The program connects each family with a dedicated coordinator who helps organize medical appointments, track care plans, and navigate resources. By reducing the stress of managing complex care, Hunter Health empowers families to focus on what matters most—time together and improved quality of life.

program overview

Mission and Meeting Format

Program Purpose

The purpose of Hunter Health is to simplify and strengthen care for families affected by Hunter syndrome by offering personalized coordination and support.

Who We're For

The Hunter Health Program is for families caring for a child or adult with Hunter syndrome who need support managing medical appointments, therapies, and resources.

Meeting Format

Hunter Health check-ins are relaxed, family-centered conversations—usually held by phone or video—to review care plans, upcoming appointments, and any new needs or challenges.

core components

Coordinated Care & Navigation

Scheduling and Reminders

Keeping Every Appointment on Track

Hunter Health coordinators help families organize their child’s medical, therapy, and specialist appointments with personalized schedules and reminders. From follow-up calls to pre-visit preparation, we help ensure no detail is overlooked and every appointment supports your child’s overall care plan.

Referrals, Prior Authorizations, Appeals

Less Paperwork, More Peace of Mind.

Coordinators guide families through insurance approvals, medical billing, and appeals, helping reduce stress and delays in care.

Resources and Referrals

Connecting You to the Right Care

Families receive help finding trusted specialists, clinics, and resources tailored to Hunter syndrome.

HIPAA Compliant Communication

Helping Everyone Stay on the Same Page

Coordinators bridge communication between providers, schools, and families to ensure a seamless, unified care experience.

Core Components

Family Empowerment & Support

Emotional Support for the Whole Family

You Don’t Have to Navigate This Alone.

Coordinators offer compassionate listening, encouragement, and connections to peer or professional support networks.

Online Portal for Hunter Syndrome Families

Your Child’s Care: Simplified and Secure.

A digital hub where families can manage appointments, store documents, and communicate with their coordinator in one secure, easy-to-use platform.

Suggested Program Schedule

Duration

Ongoing - as long as the family remains engaged and active in the program.

Timeline

Enrollment and Intake, Care Plan Creation, Regular Check-Ins, Quarterly Review, Ongoing Support

Milestones

Quarterly reviews to assess support needs.

Outcomes

By participating in Hunter Health, families can expect to:

Experience reduced stress and overwhelm from managing multiple appointments and providers.
Improve appointment adherence and follow-up consistency through reminders and scheduling support.
Gain confidence in navigating insurance and healthcare systems, including understanding coverage and appeals.
Enhance communication across care teams so doctors, therapists, and schools stay aligned on the child’s needs.
Increase access to specialists and community resources relevant to Hunter syndrome.
Feel more emotionally supported and connected to a network of compassionate advocates.
Develop a personalized care plan that grows and adapts as their family’s needs change.
Have a secure, streamlined way to manage care through the upcoming Hunter Health Portal.