You’re in a club you never wanted to join: The parent of a child with Sanfilippo Syndrome.
But you aren’t alone. We and the other Sanfilippo families around the world are with you. Here for you. Whether your child was recently diagnosed or Sanfilippo has been a part of your life for years.
Here is information about the disease, where research for a cure or treatment stands, and how to join the fight.
Patient Registry
Clinical Trials Finder– searchable tool to find all active and recruiting gene and cell therapy trials in the U.S.
Webinar:Gene Therapy – Then, Now, Later
Webinar: The Science Behind Gene Therapy
*3 more webinars in this series will be released in partnership with NORD through December!
[Expandable List?]
- Disease Information/Research
- Detailed information about Sanfilippo [“What is Sanfilippo” page]
- Research List [“Current Research” page]
- Patient Registry [EXTERNAL LINK]
- How to Help the Cause
- Joining our Foundation/Being featured [“Partner-Family Resources” page]
- Fundraising support [“Partner-Family Resources” page]
- How to Get Involved in Research [Likely a page in the future]
- Support For Your Family
- Get in Touch with Us [“Contact Us” page]
- Family Resources [“Partner-Family Resources” page]
- Meet the other families [“Meet the Families” page]
- Support Groups [List of organizations and links]
- More About Cure Sanfilippo Foundation
- What We Do [“What We Do” page]