As we went through our experience with Walker-Warburg Syndrome, we struggled to find resources and information that could help with our fight. Because the disease is so rare, the information available is limited and scattered. We want to make it easier for families to find help and reduce the stress of having to search.​


The link below provides an updated and maintained list of Early Intervention Programs by state through the Autism Speaks Organization.  While Autism is not associated with Walker- Warburg Syndrome, the early intervention programs listed provide children with therapy services no matter the disability. You will simply need to find your state from the list and it will provide you with the name and contact information for the service in your area.


This link is for the National Hospice and Palliative Care Organization.  You will be able to click on this link to find a hospice in your area based on Address, City or Zip.  Please keep in mind that you will need to call the organizations that come up to determine if Pediatric Hospice is provided.

Find A Hospice

Dr. Christopher Walsh is a neurologist at Boston Children’s Hospital.  The Christopher Walsh Lab provides a brain development and genetics clinic that studies various genetic neurological disorders including WWS.  



The National Organization for Rare Disorders (NORD®) provides resources and specific information about Walker-Warburg Syndrome. NORD® is the leading independent advocacy organization representing and supporting all patients and families affected by rare disorders.


Genetic and Rare Diseases (GARD) provides resources and specific information about Walker-Warburg Syndrome.


The Muscular Dystrophy Association is a nationwide organization that provides resources and support for all types of Congenital Muscular Dystrophy disorders including Walker- Warburg Syndrome.


CureCMD is a nationwide organization that focuses on advancing research and finding a cure for Congenital Muscular Dystrophy disorders including Walker-Warburg Syndrome.



Private Facebook Group

Throughout our journey, we discovered a private Facebook group for families of children affected by Walker-Warburg Syndrome. This was an extremely helpful group of parents and family members that were quick to share knowledge, experiences, and advice on how to face the challenges of raising our WWS kids. If you are interested in joining this group, you  will have to message the admins and be invited.

Please note that this group is only for those immediately affected by WWS.

Request to Join

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