A youth-led initiative empowering siblings and peers of those with Hunter syndrome to become confident advocates.
One-on-one guidance for families navigating the Individualized Education Program process. We help caregivers prepare for meetings, understand their rights, and collaborate with schools to ensure children with Hunter syndrome receive the educational accommodations and services they need.
A direct support initiative connecting families with volunteers who can help with practical needs—meal delivery during hospital stays, gift cards, or other acts of kindness that lighten the daily load of caregiving.
A fun, supportive workshop just for siblings of children with Hunter syndrome. Through games, activities, and honest conversations, siblings connect with peers who “get it” and build resilience, confidence, and friendships. Offered both virtually and in-person at select events.
Quarterly virtual meetups where caregivers can share experiences, ask questions, and learn from each other in a safe, understanding space. Each chat focuses on a topic relevant to Hunter syndrome, from navigating insurance to celebrating milestones.
Aids in moving logistics for specialized care. State relocation guides.
Provides personalized guidance for families with a designated case manager.
Funding opportunities to support groundbreaking research.
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Building a Future Together
Hunter Syndrome Community Conference
March 13-15, 2026 | Costa Mesa, CA
