Newly Diagnosed?
Start Here.

Receiving your child's diagnosis is one of the most heartbreaking moments a parent can experience. Nothing can prepare you for hearing that your child has a rare genetic condition and that they may face severe lifelong disabilities. 

If this is where you are today, please know that you are not alone. Every family in our community has stood where you are now. We understand the fear, the uncertainty, and the sense of isolation that can come with such a rare diagnosis because we have lived it ourselves.

That shared experience is why the WWOX Foundation was created. Families came together because WWOX children deserved greater visibility, stronger research and a coordinated effort. Since then, the Foundation has connected families and researchers, helped bring greater attention to WWOX-related disorders and supported the development of research focused on our children. This work is still growing, but it means that families receiving a diagnosis today can find a community, follow research as it develops and face what comes next together.

Although the journey ahead may seem impossible to face, there is HOPE. You do not have to walk this path alone. Today, there is a global community of families, clinicians, researchers, and advocates who are working together to better understand WWOX-related disorders, improve care and accelerate the development of treatments.
 
Take one day at a time. It is okay not to have all the answers today. When you feel ready, take the next step with us. Stay connected. Stay informed. Join Our Private Facebook Community. Move forward together.