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Our Voices, Our Future: Changing the Course of Hunter Syndrome Care
We asked. You answered. Your voices shape the future.
In partnership with Denali Therapeutics, Project Alive conducted the Hunter Syndrome Community survey to better understand the real-life experiences of living with and caring for someone with Hunter syndrome (MPS II).
Now, we’re sharing back what we heard.
The Hunter Syndrome Community Survey was conducted from December 10, 2024 to January 20, 2025 and included 47 people living with Hunter syndrome and caregivers of individuals with the condition.
Resources
- View all of Project Alive's resources and tools here.
- Check our Hunter syndrome overview video to learn more about the disease and its impact on our community here.
- To learn more about navigating insurance coverage appeals, click here.
- View Courageous Parents Network's guide on palliative care here.
- Download our Annual Health Maintenance Checklist for Hunter Syndrome here.
- Gather state specific resources here.
- Join us at our annual conference to learn more about Hunter syndrome. Visit this page to learn more.
- Download the ASK bookmark to help you at doctor's appointments here.