My daughter's genetic syndrome is rare enough we've never actually talked in person with other families affected by it. My wife and I have been participating in the Yahoo Health Group for 1p36 Deletion families and it's been wonderful to interact with others who understand our situation. Now it looks like we're going to have our first opportunity to meet together as a group.
This November the 1p36 Deletion Syndrome community will be coming together in Jacksonville, Florida for a conference about the syndrome and related topics. I'll post more info here as the event progresses through the planning stages. If you are interested in attending, visit the Yahoo Health Group and check out the threads about the get together.
I'm excited to meet with other parents face to face and learn from the many who are more experienced than I am with 1p36 Deletion care. It's a long trip from here in Utah, but we'll be doing all we can to attend and share in the experience.