Resources

From those diagnosed in utero to adults living with Dandy-Walker Syndrome, we want to help you along every step of your journey.

The resources below are designed to help families understand the diagnosis, connect with other Dandy-Walker families in their region or with similar complications, find resources and benefits in their locale, and much more. 

Dandy-Walker Information

What is Dandy-Walker Syndrome?

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it.

What Should I Expect During My Dandy-Walker Journey?

Click below to see frequently asked questions about living with or having a family member with Dandy-Walker Syndrome.

State and Local Resources

Early Intervention Programs

Early intervention programs around the U.S. provide services and support to young children with developmental delays and disabilities. These services are publicly funded and available for free or reduced costs for children 3 years and younger.

Medicaid Waiver Programs

Search for waivers to provide care, services and support for your family in your state. Please note that not all of the attached waivers are for developmental disabilities; if you need help distinguishing what waivers you may qualify for, please contact us.

State Councils on Developmental Disabilities

State Councils on Developmental Disabilities (Councils) are federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives.

Connect with Others

Dandy-Walker Parents Facebook Group

Looking for an open forum to connect with other families affected by Dandy-Walker Syndrome? Join our Facebook group today! This is a great place to learn about other families' experiences, pose questions about diagnoses and conditions, and share important updates in your family's journey!

Dandy-Walker Contact List

Stay up to date with all Dandy-Walker Alliance news and join our new contact list! Plus, once you're in our contact list, you'll have the option to connect with other Dandy-Walker families in your region.

In addition to our Dandy-Walker Parents Facebook group, there are several other Dandy-Walker support groups on Facebook for different age ranges, locations, and more. These are all great forums to connect with other families in your region or with your diagnosis and conditions. 

Check out the list below to find others that may be useful along your journey.