You are the parent of a child with Sanfilippo Syndrome. But you aren’t alone.
You’ve just been told your child has Sanfilippo Syndrome, and it probably feels like your entire world has been turned upside down. You may be overwhelmed and desperate for information and for hope. We know, we’ve been in your shoes.
You are not alone. We are here for you.
We urge you to reach out to us at Cure Sanfilippo Foundation to schedule a conversation with our experts. We are also parents of children with Sanfilippo and are here to talk through your questions, learn about your child and family, and help you think through immediate next steps and plan for what the future holds.
Despite the diagnosis of Sanfilippo, know that children with Sanfilippo still experience joy and an immense amount of love in their lives.
The following is information about the disease, where research for a cure or treatment stands, resources to support your family, and how to join the fight.
Guide for Parents of A Recently-Diagnosed Child
This brief guide, “Next Steps: After Your Child Is Diagnosed With Sanfilippo Syndrome,” created by the Foundation walks you through the initial questions most families have about Sanfilippo, including what to do next.
This introductory information is intended to help you be proactive in caring for your child and giving them the best quality of life.
Clinical Care Guidelines for Sanfilippo
Clinical care guidelines for Sanfilippo Syndrome are available to guide you and anyone providing medical care, rehabilitative care, or support services to your child. The freely-available guidelines provide expert-led recommendations on Sanfilippo Syndrome-specific care management and monitoring of disease-related changes. The guidelines remove the guesswork of which symptoms should be monitored, through which tests, and how frequently, while acknowledging the importance of patient-specific flexibility.
Disease Information
Now that you have a diagnosis, you are probably searching for as much information about Sanfilippo Syndrome as possible. Let’s get you answers.
Research on Sanfilippo
At the top of your mind is knowing what research is happening globally to find a cure or treatment for Sanfilippo Syndrome. And most importantly, what clinical trials are happening and is your child eligible.
How to Help Find a Cure
Is your family ready to jump into the fight to advocate for and accelerate discovery of a cure for Sanfilippo Syndrome?
Support For Your Family
Sanfilippo Syndrome is a disease very few people have ever heard of. It’s our life. We have information and resources to help your family navigate life with Sanfilippo.
More About Cure Sanfilippo Foundation
Get to know how Cure Sanfilippo started, who guides it, and what impact it’s making on its mission to cure Sanfilippo.