Welcome Letter to Parents

Hello and welcome to the DDX3X Foundation! If your child has just been diagnosed with DDX3X Syndrome, please know you have landed in a place of people who understand. You may be feeling scared or overwhelmed, or maybe you’re feeling grateful to finally have an answer to so many questions. Either way, we are here for you.

As moms of daughters with DDX3X Syndrome, we created this international foundation to provide you with the support you need to navigate this journey. This website and our Facebook group are intended to explain what we know about DDX3X mutations and to provide a sense of community, no matter where in the world you are located.

Our Recently Diagnosed page provides some key information to get you started. You can also reach out directly to us at [email protected] – which is checked daily. Additionally, a simple and comprehensive summary of DDX3X Syndrome is available by RareChromo.org in English, French, Dutch, Portugese and Spanish.

We often hear from parents after receiving a diagnosis – what do we do next? A great way to start is to join our private Facebook group at https://www.facebook.com/groups/geneddx3x, to connect with our larger community.

We also invite you to enroll your child in our DDX3X Registry. This registry is used to help our researchers as they continue to search for treatments and a cure. None of the information that identifies your child is shared – only the DDX3X-specific information. You can join the registry here: https://dfr.ddx3x.org/

Thanks to our generous supporters, we are proud to have funded research at a number of top institutions in the United States and look forward to expanding our reach further into Europe. Learn more about the research we have funded here.

Lastly, we host regular scientific conferences to bring everyone in our community together to network and hear from researchers in the field about the latest developments on DDX3X. This year our conference will take place October 22-24, 2026 in Wilmington, DE. For more information visit the event page.

Welcome to the tribe – we are so glad you are here!

Warmly,

Beth and Liz