Welcome to the Family!
We are so happy you found us and are excited to come alongside you and your family on this journey. Everyone in the CSS community has a story of how they searched for or were found by a diagnosis.
We have prepared for you a digital Welcome Packet, filled with information, resources, and helpful links to support you as you learn more about Coffin-Siris Syndrome and connect with our wide and amazing community. Providing these resources digitally allows us to keep the information current and easily accessible whenever you need it.
If you reside in the United States and would prefer a physical Welcome Packet, one is available upon request.
We look forward to hearing your story and sharing ours.
Most new families have a lot of questions, so we’ve put together a FAQ document with answers to some common questions as you enter this journey.
If you’d like to share your story, please reach out to us.
