Continued Support
Resources
Learn about what we offer to the kids and families within our community.
The Big Picture
What We Offer
Project Alive's resource hub is built for the Hunter syndrome community. You'll find helpful resources for the everyone under Community Resources, insightful offerings for teens and adults with MPS II under Journey into Adulthood, and a listing of all active clinical trials. These pages will continue to develop with new offerings including webinars and workshops.
Key Offerings:
- IEP Advocate Request Form
- Clinical Trial Relocation Support (launching in 2024)
- Caregiver Buddy Program (launching in 2024)
- Adult/teen Mentorship Program
- Birthday Club
- Toolkits and resources
- Webinars and workshops
In order to develop programs effectively and to obtain the funding necessary to provide these services for free to Hunter syndrome community members, we need to collect important information from you. Please fill out the Community Program Enrollment below to access all of our offerings. You will also be notified when new services are launched.
Your information will never be shared. These demographics will only be used as data points. Your name or any other personal information will never be shared outside of Project Alive. This survey is strictly confidential.
Recent Resources
Federal Education Rights
Speech or Language Impairment Eligibility
MPS II Active Clinical Trials
This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.